More than 71% of respondents had a tremor and almost 80% had ataxia, meaning that most experienced both symptoms, and have experienced them for varying lengths of time – from one month through to 25 years.
Tremor
For those with tremor, the legs (64.9%) and hands (60%) were most often affected, although a significant portion had affected arms (36.9%), head (14%) or trunk (10%). Other affected parts of the body noted were eyes, feet and toes. One respondent reported an “internal tremor”.
Almost two thirds said they had a tremor at rest and 57.9% experience tremor when trying to grasp or reach for an object, indicating that many survey respondents had both types. More than 70% felt their tremor worsened with stress, while 85% said that fatigue or tiredness made it worse.
“Everything gets worse under stress. When they
are present, the tremors seem to want my
undivided attention.”
“I think I am probably stressing over little things
when it happens.”
“Stress makes it worse, as well as not eating right
or getting enough sleep.”
62% found that tremor interfers with activities they need or want to do, particularly carrying out household activities, performing self-care or pursuing hobbies. A number of respondents specifically noted that getting out of bed was difficult due to tremor, as was walking, writing, sleep and sex.
“My hand tremor is constant making normal
activities such as food preparation, tea pouring,
nail cutting or applying makeup quite difficult.”
“Almost everything is affected at some level, but I
just do activities in a different moderation.”
“I refrain from joining group activities because people have commented on my tremors. It makes me feel uncomfortable.”
Ataxia
For those with ataxia, a high number of respondents said their balance was affected (91%), followed by walking (85%) and standing (69%). Problems controlling a range of movement was noted by 43%, while sense of perception affected 41.8%. One third said their speech was affected, and 30% had difficulties with eye movement. Other specific problems cited were sitting and eating.
Again, a high proportion said stress (77.1%) and tiredness/fatigue (92.5%) worsened the symptom.
Quite a few noted that heat also made their ataxia worse. A number of respondents said they didn’t know if either situation was a trigger.
“I am not sure if the stress induces the ataxia or if
the ataxia induces stress.”
“Early on it was hard to recognise that stress made
it worse.”
“When I am tired I sense my legs are heavier and
do not respond to my commands.”
“Because I struggle not to let the ataxia show too
much, I fatigue easily.”
A high number (86%) felt that ataxia interferes with activities they like or need to do, particularly exercising (76%) and carrying out household tasks (71.6%).
The majority of those who replied to the survey (70.9%) did not take any medication for either symptom, but of those that did, almost half u sed gabapentin. Most had not used alternative orcomplementary therapies for ataxia or tremor, but those that were found to be helpful for some included cooling therapy, dietary or herbal supplements, guided imagery and relaxation, massage and yoga. Only 1.2% had any form of surgery for either symptom.
 When asked about physiotherapy, the majority (64.6%) did not have any; of those that did, 25.4% found it helpful. More than half of those surveyed found that exercise helps (many particularly said swimming), but one third said it had no effect. Overall, 58% said that tremor and ataxia “somewhat negatively” impacts their life, with 27% saying “not at all”, and 15% saying "very much". The survey shows the effect these symptoms have on people living with MS and the importance of assessing each person’s situation and tailoring treatment and rehabilitation plans accordingly.
The majority of those who replied to he survey did not take any medication for either symptom, but of those that did, almost half used gabapentin.
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