I still know how to do things but my body won’t obey.
For many people an early and very confusing symptom of Parkinson’s disease is the discovery that some part of their body no longer does what they expect it to.
Eddie says the message he sends to his leg seems to be delayed.
While he was running one of Rafa’s legs stopped working without any warning.
Other people found that their way of walking had changed, sometimes without them noticing. Their steps have become shorter and they may be failing to lift their feet up. Fred says that he was not aware that he was shuffling until other people pointed it out. Khadim described how he felt there was always someone behind him with strings that were attached to his legs, so that as he was trying to go forward something pulled him back.
As the condition progresses a symptom known as freezing may develop. It is similar to what Rafi experienced but may occur at any time and in all sorts of different situations. Freezing is not a symptom experienced by all people with PD. For those who get it, it is usually possible to find a medication regimen to help. But, as many of the people we interviewed described, there were times and particular situations in which it could occur and cause embarrassment, inconvenience and even danger. Freezing usually occurs at the beginning of a movement, getting up from a chair, starting to walk, starting again after stopping.
While some people said they had learned to expect freezing to occur in particular situations not everyone responded to the same stresses. Several people mentioned that it was much more likely to happen when they were in a small confined space than when out in the open. Others mentioned stressful situations. Rachel was particularly scared of it happening when she was trying to get on or off a train. Something equivalent to freezing would happen to her when she had to put a coat on in a hurry. Mari remembered how Humphrey had once frozen on a traffic island. Freezing was more likely to happen when the levels of anti-Parkinson’s medication were becoming low so that Jean said it would happen in the night when she got out of bed to go to the loo and several people mentioned it happening if they were late taking their medication.
Humphrey describes situations when he often freezes and wonders why it doesn t happen at other…
Geraldine describes freezing while out in the street and why it is a problem getting herself…
Isabelle understood why her mother would sometimes freeze in doorways and describes how she would…
Different from freezing, but often associated with it is another movement disorder known as festination. In festination the steps become smaller and smaller and faster and faster and the only way to come to a halt is to aim for an obstacle and virtually crash into it. If no suitable object presents itself there is serious danger of falling forwards. For someone with Parkinson’s level ground can be just as problematic as a hill. Surprisingly several people mentioned that although they had great difficulty walking on level ground, going up stairs was not a problem.
David describes festination, what provokes it and what he needs to do to avoid it.
Fred describes what he has been told to do to avoid festination.
Philip describes some of the situations where he has experienced festination and some of the…
Tom explains the difference for him between getting stuck in doorways and going up stairs or…
Karen describes various problems with movement which occur on bad days.
Even when they had not actually experienced festination or freezing many people described having lost their instinctive understanding of how to walk. In addition to problems with their legs, many people with Parkinson’s disease also fail to swing their arms in the way that usually accompanies walking. Peter explained how he felt it had become difficult to co-ordinate between the brain and movement before he moved, he had always taken such things for granted.
Being in bed could be particularly disabling if they had difficulty starting a movement. Rachel describes herself as a beached whale in bed requiring a special contraption which helps her to pull herself up and out. John and Julie had devised a cord for him to pull on to get him up. One person said that the ironic side of this was that when they were just lying in bed, not trying to move they could imagine that they were normal.
Several people described how they had overcome their problems with walking. Kevin described how, once he understood that his steps kept getting smaller and that he was not swinging one of his arms, he made a conscious effort to overcome these difficulties. Geraldine described wearing a rucksack to encourage her to stand up straight and sometimes used a scooter to get around, balancing on the good foot, scooting with the bad one. Humphrey would count rhythmically to persuade himself to move.
Sharon has created a tape recorder in her head’ which reminds her to keep moving.
David resorted to marching methods he had been taught in the army.
Finally, Tom demonstrated how even when he was most disabled by freezing and festination having delayed taking his medication, he had ways of making himself walk and even carry out feats of agility far greater than most people could dream of.