Hit by PSP:
Getting the RotoBed® turned back
on the light in my husband’s eyes
PSP Parkinson: After a long life as a firefighter and ambulance driver, Hans Villadsen was hit by PSP Parkinson and needed help. He was granted a RotoBed®Free and became self-reliant. Later on the bed was taken from him, but his wife refused to accept that. For his sake.
It was on the dance floor of a jazz club that Hans Villadsen’ s body first showed signs that something was wrong. He was 65 years old and enjoying a dance with his Else, when he suddenly stopped moving. He just stood there in the middle of the dance floor.
– I have to get back to the table. My legs won’t move, he said.
At first Else didn’t think further about the incidence. Her big, strong husband might have just gotten a glass of wine too much? But with time, more signs showed up. Although Hans was still riding a bicycle and seemed fit, he began dragging his feet while walking. Later, one shoulder came to hang slightly. In 2012, three years after the dance at the jazz club, Hans Villadsen was diagnosed with Parkinson’s. In 2016, it became clear that he was hit by PSP Parkinson, an aggressive form of Parkinson’s that causes insecure gait, balance problems and a tendency to sudden falls.
The couple managed thing together until two years ago. By that time, Hans had so much difficulty controlling his movements that he often fell when he was getting in or out of bed. And for Else, it was no longer possible to help her husband alone.
– He could no longer lift his legs out of bed by himself. They were pure dead weight, and he weighs almost twice as much as I do, so naturally I couldn’t handle it, says Else.
A solution was needed, and the local municipality proposed a RotoBed®Free. The couple had never before heard of a bed that could rotate the user out of bed.
– We were not at all aware that it existed, but it sounded like a dream. We were eager to try it, and it just made a huge difference right from the start. Hans still needs a little bit of guidance – like telling him to move his right foot a little forward and that sort of thing, but apart from that he gets out of bed by himself now, Else says.
When Hans’ bed was suddenly the staff’s bed
Hans Villadsen’ s disease developed, and shortly after New Year 2020, he moved into a nursing home, bringing with him the RotoBed®Free from his bedroom. And the staff at the nursing home was as excited about the bed as Hans was. But then the couple made a decision that unfortunately became costly for them.
– We chose to move to a different municipality, where we had found a nice care center with a sensory garden, which suited Hans very well. But now the old municipality said that the bed was an aid for the benefit of the staff, not for Hans. Therefore we were not allowed to bring the bed, and the new municipality wouldn’t grant a RotoBed® to Hans.
Suddenly there was no longer a rotating bed to help Hans in and out of bed. And Else was frustrated.
– I cannot imagine Hans living a life being hoisted out of and into bed. Hanging up there and… it’s uncomfortable, and unworthy. But that was the alternative to the RotoBed®. I want him to keep the mobility he has left, for as long as possible. This is the only way to do so, because being hoisted would mean not using his legs, she explains.
So in the end, Else and Hans found the money to pay for a RotoBed®Free themselves. In the beginning Hans was reluctant; he didn’t want that much money to be spent on him, but he was overruled by Else.
– I had to ask at the new care center if Hans was at all allowed to bring it with him if we bought a RotoBed® ourselves. Fortunately, they were excited, and as soon as they heard about it, they searched for YouTube videos to see” the wonder”, she says, adding:
– I really don’t understand why not all municipalities invest in them. It’s a great invention, and I think it pays off, because it helps maintain mobility, and then the staff avoids sore shoulders and backs.
For Else, it was a relief when her husband got a RotoBed®, since it saved her the great physical effort of helping him. But to Hans the bed has meant even more, she says. Not just thanks to the physical help, but thanks to the dignity in being able to get out of bed himself.
– Hans has been a chief fire fighter and ambulance driver for 40 years. All his life he has helped other people. Suddenly he was unable to do anything by himself and that was really hard for him to accept. When he got his RotoBed®Free, he became more self-reliant again. That turned back on the light in his eyes.
What is PSP?
Progressive supranuclear palsy (PSP) is a less well-known neurodegenerative brain condition which is sometimes misdiagnosed as Parkinson’s disease or Alzheimer’s disease (or other forms of dementia). There is no known cause or cure. Most often patients are in their sixties when they are diagnosed with PSP, but it may hit al early as in the fourties. In the early stages of PSP there is a similarity to some Parkinson’s symptoms. For that reason, PSP Parkinson is included in a group of diseases called Parkinson’s Plus Syndrome or Atypical Parkinsonism. However, PSP progresses much faster, causes more severe symptoms, responds very poorly to Parkinson’s medication, and has a significantly reduced life expectancy. 5-6 people in 100.000 have PSP (source: www.psp.org)
PSP Parkinson is characterized by some slowness with significant muscle stiffness throughout the body – especially in the neck and back muscles and sometimes with a backward bent posture as a result. Tremor is rarely seen. There is usually an equal amount of parkinsonism on both sides of the body. The motor problems often lead to major gait and balance disorders as well as a consequent tendency to fall. This tendency to fall is often exacerbated by the lack of movement of the eyes.
The slow movements of the eyes complicate everyday functions, for example in the eating situation or in connection with walking. Visual difficulties can also cause problems in terms of reading subtitles on TV, as you can not move your eyes fast enough. Reading in general can be experienced as problematic, as it can be difficult to keep an eye on the individual line, difficult to make line breaks and difficult to find out how far down in the text one has come.
There may be an effect on speech and swallowing function due to poor coordination and slowness in the muscles of the mouth and throat. Constipation and difficulty emptying the bladder can occur.
Unlike Parkinson’s disease, PSP is life-shortening. However, there are training and treatment options that address the symptoms and thus will be able to increase the quality of life of the individual.
It is important that both patient and relatives have an in-depth conversation with the neurologist, where you can clarify any questions about the disease and the individual diagnosis. Just as the disease and symptoms are individual, the treatment is individually tailored.