The part of the body most affected by spasticity was reported to be both legs (72.8%), followed by the one leg (26.5%), the trunk (21.6%), one arm (18.7%), and two arms (17.8%). Other areas of the body noted were the neck, hands, fingers, bladder, bowel, buttocks, throat, face and jaw, while some said that they had spasticity in their whole body.
“Typically it is just my right leg that is affected,
but at times it can be both depending on how
tired I am.”
A high number of respondents recorded experiencing stiffness and/or tightness (88.7%), while cramping, pain, involuntary movements and/ or difficulty performing voluntary movements was experienced by more than half of respondents. A third said their spasticity was constant, while 27.5% described it as intermittent and 27.1% found it was worsened by specific activities or situations. Many noted that their spasticity was often worse in heat and when they were tired or stressed. Others found it worse when they relaxed or at night when they were lying down.
“The pain and discomfort caused by spasticity
affects my ability to sleep as it tends to be worse
at the end of the day.”
Of particular note is the high number that found that spasticity interferes with activities they like or need to do, highlighting the impact this symptom can have on daily living. The activities most affected were exercise and carrying out household activities, while approximately half of respondents felt that the other categories (self-care, hobbies, family activities and working) were also affected. Under “other”, many respondents mentioned sleep interference.
“Just suddenly it’s there. One minute I am fine
and then the next I am really stiff and sore.”
“I find my legs stretching all by themselves,
as if I were doing a stretching warm up before
exercise, although I am lying in bed.”
“I have learnt to improvise and continue to do
everything myself. The worst part is not being
able to run when it starts pouring!”
An interesting result from the survey was that of those who answered the English language survey, almost two thirds were taking medication for spasticity, while the majority (54.9%) of those who answered the Spanish survey were not taking medication. This may indicate a difference of availability, approach or preference between these two groups of respondents. The most commonly used medication in both surveys was oral baclofen.
A third of the people who replied had used alternative therapies. Specifically mentioned were the use of heat and cold (such as ice), acupuncture, yoga, pilates, massage, smoking marijuana, meditation, prayer, magnet therapy, reflexology, vitamins and osteopathy.
“It kills me that I can’t play a game of tennis with
my wife (which we did on our first date)”
Only 14.4% had used local treatment techniques (mainly botulinum toxin) and 2.3% had had a surgical intervention. Only a small number of respondents (27) had had a neurosurgical procedure and of those, most had ITB. These results show a general preference (or limited options) amongst respondents for “conventional” treatment.
The majority found that exercise or physiotherapy helped their spasticity “definitely” (27%), “often” (16.2%) or “sometimes” (32.6%) showing the high value of this therapy for people with spasticity. A quarter found it rarely or never helped.
“Physiotherapy is fantastic. I feel like a new
person. The physio is showing me exercises
to strengthen muscles and that is improving
everything in general.”
“We have adapted our family outings to allow us
all to fully participate.”
|
