Living with FOG – insight into the experience of patients

Freezing of Gait (FOG) is a common symptom of Parkinson's disease, characterized by unexpected freezing of the legs during walking. FOG can increase the risk of falls and significantly impair the quality of life of those affected. The exact cause of FOG is not yet fully understood, and managing these episodes can be complex.

To understand the impact of FOG on daily life, we interviewed patients suffering from Parkinson’s disease. The following paragraphs give an insight into the subjective experiences from the view of several patients:

One patient described FOG as though they were being “pulled down by a magnet”, FOG is like a state of “complete stiffness”. They said that “With freezing, it’s the case that the legs don’t keep walking.” They experienced “freezing as the worst thing […] there is.” Another patient states: “I just stand there, can’t go forward, can’t go backwards.” They also want a solution for FOG "[…] so that life is still worth living. That you don’t think about ’what’s the point of it all?”. One patient describes freezing and its consequences: “[…] what can happen is, if the weight is already shifted forward, that you fail to make the compensatory step and then you just fall. [...] It’s as if you were rooted to the spot.” Yet, there was also one patient who found their quality of life only moderately effected (but also suffered less FOG than the other patients). When asked if they were bothered by the effects of freezing, this patient responded: “[…] it doesn’t bother me that much.”  

Importantly, many patients expressed their fear of being conspicuous in public: One patient experienced their life as “restricted”, because of their fear of falling down in public and their increased dependence on others. Another patient expressed the same fear of falling down, and felt like people were watching them: “On the one hand I really enjoy that there are people who want to help me, on the other hand I would prefer not to show these symptoms, so they wouldn’t be necessitated to help me but that... I would be inconspicuous.” One participant said that “Freezing, amongst others, was a criterion why I didn’t go outside”. They further describe a situation “[…] when I went to the check out at Aldi, I had to see whether I would pay and if it didn’t work out properly, I would either start to tremble, or I would have freezing. Then, in the past, there were comments from people in the queue like ’Well if you can’t take it, you shouldn’t be drinking this early’ and stuff like that." 

In summary, these quotes give an impression of what living with FOG feels like, and which negative impact it can have on the lives of those affected. These quotes stress the necessity of inconspicuous, effective methods to alleviate FOG. The vibrating socks we are currently developing within this project are designed to minimize the negative effects of FOG and improve the quality of life for those affected.

 

The summary is taken from Kärcher, S.M. (2024). On the transfer of vibrotactile wearables from science to application. [Dissertation, forthcoming].  University of Osnabrück, p.80ff. The wording of the quotes is taken from Doering, E. (2019). Vibrotactile Cueing to Prevent Freezing of Gait in Parkinson’s Disease, a pilot study [Unpublished graduate thesis]. University of Osnabrück, p.41ff. The quotes were translated from German to English.