Walking can be a real problem for people with ME/CFS but when researchers asked them to walk and think at the same time the problems really started to show up.
Find out what happened in (and take the poll – how is your walking going?) in
Lives Interrupted Latest Story
Allyn Archer
Atlanta, United States
Former occupation: Architect, Professor of Architecture
$2,768,291
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I have fm and in the past I had a great deal of difficulty walking and thinking. At its worst I could not walk and talk at the same time. All of my movements were slowed and I used a walker. It would take a prohibitively long time just to get up to go to the bathroom. I had mild dementia and incontinence. I saw many docs and no one knew how to address it. In my case I was held back by the fact that docs were trying to pin it to fibromyalgia. I was unbelievably fortunate to see a neurologist who had the answer. He diagnosed it as “normal pressure hydrocephalus” ie “water on the brain”. The diagnosis was arrived at through a thorough interview and testing. I had all 3 of the classic symptoms of NP hydrocephalus: gait disturbance, mild dementia and incontinence. Further studies through a CT scan and then a spinal tap confirmed the diagnosis. The CT scan showed enlarged ventricles. Removal of even a small amount of spinal fluid at the time of the spinal tap relieved the symptoms but only for an hour or so. I then had brain surgery for the insertion of a permanent shunt to drain the excess fluid. The results were immediate and nothing short of miraculous. I now walk normally, no longer am I incontinent and the dementia has cleared. I still have FM and am pretty compromised by that, but I do have my life back. I write this in some detail in hopes that it helps someone. I just cringe when I read the comments here about walking and thinking difficulties because I know what it is like, holding onto walls and using a walker and trying to remember from one moment to the next what I was doing. This will not be an answer for everyone, but I pray that some others can be helped as I was. I call myself the “Miracle Baby”. My friends and family are thrilled to have me back.