Alex has had Parkinson’s disease for almost 10 years. He took part in a scientific study with a smartwatch that can measure the main symptoms of the disease. “All in the hope that my disease can be stopped.”
Alex Hoogveldt (55) was not yet 45 when he started having problems with his left arm. “My handwriting got worse and my surroundings noticed that I was moving differently.” When he went to the doctor and did a few tests, Alex was diagnosed with Parkinson’s disease within 15 minutes.
‘That was heavy’
The neurologist Alex knocked on spoke plainly. “He immediately said: ‘You will not die of Parkinson’s, but with Parkinson’s. So I can just grow old with it.”
But the diagnosis was severe, he says. Before that, he didn’t know much about the disease. “The only ones I knew with Parkinson’s were Prince Claus, the Pope and Jerney Kaagman.”
Alex used to work in sales but was declared incapacitated a few years ago. “My concentration is much less good than it used to be and that didn’t work with my work. I had to give that a place.”
He registered with the patient association for people with his disease. He wanted to think along about special projects. For example, he took part in the research project of neurologist Bas Bloem of Radboudumc, in which about 600 people with Parkinson’s disease were followed for 2 to 3 years via a special smartwatch with motion sensors. The results of that research are just published.
“This is one of my most special publications,” says the neurology professor with pride about his research. “That watch is like a digital thermometer and gives us so much more insight into how the patient is actually doing.”
Normally a patient comes to the hospital a few times a year for measurements. But it turns out that measurements in the home situation appear to give a different picture for many participants than measurements in the hospital.
Disaster for science
“In the hospital, for example, the shaking gets much worse,” says Bloem. “That is probably due to the stress. Paradoxically enough, people walk better in the hospital because of the same stress.”
That is disastrous for patient care, he says. “And that is also a disaster for science. Because what do those measurements say a few times a year?”
Bas Bloem is convinced that the smartwatch will give him a much more complete and accurate picture of the severity of Parkinson’s in his patients.
“That also makes me a better doctor in the end, I think. I get a better picture of the patient and can make a better decision.”
The research doesn’t stop here. The neurologist will carry out further research and eventually hopes to be able to measure disease progression over a longer period of time.
New medicines are also being developed against the disease, says Bloem. “We will soon be able to investigate them much better with that smart watch.”
Alex Hoogveldt has worn the watch for the past 3 years. “It all went by itself. I did the exercises at home and the watch registered. A lot of data has been stored from all of us, that’s why we do it all.”
This kind of research gives him something to hold on to, says Alex. “Everything for big data, in the hope that my disease can be stopped. Who knows that there will be another drug that can cure me. Or a drug that makes the disease stop.”
Watch the TV report here.