The full analysis can be found here:
https://drive.google.com/file/d/0BzEoTkR5HCWhbEJMcVZncFNGV00/view?usp=sharing&resourcekey=0-5WakXsT4x1aiVBwu1sG2jw
This
reports my analysis of the results of an on-line survey for people with HSP
launched in September 2014. There were 97 respondents who completed the survey,
predominantly from the USA
and the UK
Here is a short version of the 2014 suvey results....
Mobility Analysis
All 97 respondents
gave answers to this question. Around half of respondents use walking
sticks/poles/crutches/canes and around two fifths of respondents use a
wheelchair or mobility scooter. FES is the
mobility aid used by the least number of people, with a take-up of around 5%.
The results
also allow the distribution of respondents within a scale of mobility which I devised
last year. This is an “HSP mobility score” which allows me to cross-reference
mobility against the other questions in the questionnaire. The definition of
the HSP mobility score is;
- No mobility effects
- Can walk without aids but some
effects
- Orthotics/AFO/FES and/or
Sticks/Poles/Crutches/Canes some of the time
- Sticks/Poles/Crutches/Canes and
Frame/Chair some of the time
- Sticks/Poles/Crutches/Canes
most of the time
- Sticks/Poles/Crutches/Canes all
of the time
- Rollator/Walking frame most of
the time
- Rollator/Walking frame all of
the time
- Wheelchair/Mobility scooter
most of the time
- Wheelchair/Mobility scooter all
of the time
Table 7 – Overview of mobility aids used
Mobility Aids Used -
Overview:
|
Respondents
|
Percentage
|
Mobility Score
|
Those without aids
|
19
|
20%
|
0-1
|
Those who use mobility aids some of the time
|
24
|
25%
|
2-3
|
Those who use sticks most/all of the time
|
24
|
25%
|
4-5
|
Those who use frames most/all of the time
|
13
|
13%
|
6-7
|
Those who use chairs most/all of the time
|
17
|
18%
|
8-9
|
Medication
I wanted to
explore which reasons people take which medicines for and how effective they
perceive those to be. In total 91 respondents answered this question. There
were 68 people who indicated that they took at least one medication and 23
respondents who indicated that they did not take any medication at all.
Around three
quarters of people are prescribed at least one form of medication for their HSP.
Of the 23 who responded that they did not take any medication 10 indicated that
they have not ever been on medication for HSP. The other 13 had previously been
prescribed at least one medication, but no longer take any either because of
side effects, because the medication was not effective or a combination of
both. Naturally, readers should consult with their doctor if they wish to
change their medications.
The
majority of respondents included which symptoms they took their medication for,
as shown for symptom experienced by at least 10 respondents;
Table 10 – Symptoms that people take medication for
Symptom
|
Number of medications taken
|
Spasticity
|
49
|
Pain
|
29
|
Bladder
|
22
|
Spasm
|
19
|
Depression
|
12
|
Nerve Pain
|
10
|
Spasticity and Spasms
Almost half
of the medication being taken is used to treat spasticity and spasms, the key
features of HSP. The biggest proportion of this group of medications comprises
people taking Baclofen. The list of medications where at least 5 respondents
are taking is shown in the following table, with descriptions of the
medications taken from the UK NHS and drugs.com websites.
Table 13 – Spasticity and Spasm Medication
Medication
|
Description
|
People taking medication
|
Baclofen
|
Baclofen reduces muscle tone and unwanted muscle
contractions. This helps to reduce painful muscle spasm.
|
43
|
Botulinum toxin A / Botox / OnabotulinumtoxinA
|
Botulinum Toxin Type A is used to treat muscle spasms. It
works by stopping muscle contraction in the muscle that it is injected into.
This prevents muscle spasm. It also blocks pain signals, which indirectly
block the development of a migraine.
|
7
|
Diazepam
|
Diazepam is a medicine which helps to control feelings of
anxiety. It makes people feel less agitated and less tense. It also acts as a
sedative and an anticonvulsant. It can help to relieve muscle spasm.
|
7
|
Tizanidine / Zanaflex
|
Tizanidine reduces muscle tone. This helps to reduce
painful muscle spasm. The effect of Tizanidine usually lasts for a few hours.
|
6
|
Baclofen
43 Respondents
indicate that they take Baclofen for HSP symptoms. The symptoms, as described,
fall into two areas, spasticity, with 31 respondents and spasms, with 7
respondents. 6 of the respondents indicate that they take their Baclofen
through an intrathecal pump whilst the other 37 take tablets.
In addition
there are 26 other respondents who indicated that they have tried Baclofen in
the past, but no longer take it, including 1 who used use an intrathecal pump.
The 38
respondents who currently take Baclofen for spasticity and spasms cover the
full range of mobilities. Daily doses range between 10mg and 180mg for oral
tablets. Generally, the dose of Baclofen is higher with increased spasticity/loss
of mobility, but there are exceptions to this trend both ways. 15 Respondents
indicate that their dose has increased over the years, with 5 respondents
indicating no change.
31 of the
38 respondents who currently take Baclofen gave details of their side effects.
10 respondents had no side effects, 11 respondents found Baclofen made them
sleepy or drowsy. The other 10 respondents indicated a range of side effects
including bowel/bladder issues, dizziness, dry mouth, stomach ulcers, blood
pressure issues and short term memory loss.
Of the 26
respondents who indicated that they no longer take Baclofen, 19 indicated why
they had stopped taking it. 9 respondents indicated that they did not perceive
any benefits from the medicine, 3 indicated it made them too drowsy/sleepy with
the other 7 generally noting side effects outweighing benefits.
Most
respondents indicated that the benefits of Baclofen have not changed over the
years whereas other respondents were not sure if there had been a change. One
respondent noted a “huge” difference moving from tablets to an intrathecal
pump.
Respondents
showed that, on the whole, people currently perceive benefits from the
medicine, it is important to them and they follow the prescribed dose. There
are some respondents who take the medicine but who do not perceive any
benefits. The majority of respondents who currently take Baclofen would recommend
it.
Baclofen is
one of the recognised treatments for HSP. The first paper to mention the use of
Baclofen to treat HSP seems to date from 1989, in the Journal of the Medical
Association of Thailand (PubMed ID: 2738487). Papers continue
to be published on this into 2015, with just over 20 papers altogether.
Botulinum Toxin
Type A
7
respondents indicate that they take Botulinum
Toxin Type A for treatment of HSP symptoms, predominantly spasticity but also
spasms. This is commonly known as Botox, although there are several different
types of treatment. For ease I will refer to this treatment as Botox in the
remainder of this section. One respondent indicated that they have previously
taken Botox but no longer take it because it ceased to be effective.
All respondents who take Botox use mobility aids to some degree with
mobility scores ranging between 3 and 9. Typically Botox is injected every
three months and the effects are noted as lasting for between a few weeks and a
few months. Side effects are generally not experienced, although one respondent
noted weakness for around a week after injection. Apart from one respondent,
Botox is perceived as having benefits and would be recommended to others.
Botox is
one of the recognised treatments for HSP. The first paper to mention the use of
Botox to treat HSP seems to date from 2003, in the journal Developmental
Medicine & Child Neurology (PubMed ID: 14667075). Papers
continue to be published on this into 2015, with 4 papers altogether.
Diazepam
7
respondents indicate that they take Diazepam for
treatment of HSP symptoms, predominantly spasticity but also spasms. No
respondents indicated that they have previously taken Diazepam but no longer
take it.
All respondents who take Diazepam use mobility aids to some degree with
mobility scores ranging between 3 and 8. Typically one dose is taken daily,
often at night, although some take more frequently and less frequently than
this. The principal side effect noted is sleepiness, by 4 respondents. Diazepam
is generally perceived as having benefits and would be recommended to others.
Diazepam is
mentioned in one HSP paper from 1989, in the Japanese journal No to Shinkei - Brain
and Nerve (PubMed ID: 2803825).
Tizanidine / Zanaflex
6
respondents indicate that they take Tizanidine
for treatment of HSP symptoms, for both spasticity and spasms. 10 respondents
indicated that they have previously taken Tizanidine but no longer take it,
either due to side effects or to no perceived benefits.
Most of the respondents who take Tizanidine are able to walk, with 4
having a mobility score 3 or less, with one respondent scoring 5 and one
scoring 8. The principal side effect noted is tiredness or fatigue, by 5
respondents. Those who currently take Tizanidine
generally perceive it to have benefits. There are some reservations recommending
it to others.
Tizanidine
is reported as having benefits for spastic paresis in 1982, in the Journal of
the Neurological Sciences (PubMed ID: 7035623).
Other Treatments (Fewer
than 5 respondents)
Of the
other treatments for spasms and spasticity taken by respondents, only Levodopa
is described as a treatment for HSP in the Movement Disorders Journal in 2006
(PubMed ID: 16463348).
It is interesting to note, however, that Nabiximols/Sativex is reported to also
control pain and has benefits on bladder issues, that Dalfampridine/Ampyra is
reported to reduce fatigue and that Levodopa is reported to improve the control
of muscles. One respondent indicated that they had a spinal cord stimulator
implanted which was the biggest benefit they had of all.
Pain
Many people
are taking a range of painkillers, some are over-the-counter medicines like
paracetamol right through to strong opioid medication like morphine. At least 5 respondents are taking antidepressant
or anticonvulsant medication as shown in the following table;
Table 16 – Pain Medication
Medication
|
Description
|
People taking medication
|
Amitriptyline / Elavil
|
Amitriptyline is a tricyclic antidepressant. It is also a
medication that is used in management of long term (chronic) pain, especially
nerve pain. It can also be used for improving sleep. It is prescribed in low
doses for managing pain and is not addictive. Amitriptyline is also used for
the treatment of bedwetting in children
|
6
|
Gabapentin / Neurontin
|
Gabapentin is an anti-epileptic medication, also called an
anticonvulsant. It affects chemicals and nerves in the body that are involved
in the cause of seizures and some types of pain. It is also used to treat
restless legs syndrome (RLS).
|
6
|
Amitriptyline / Elavil
6
respondents indicate that they take Amitriptyline
for treatment of HSP symptoms including nerve pain, pain and restless legs. 1
respondent indicated that they have previously taken Amitriptyline but no
longer take it, due to trying a
different medication at the moment.
The respondents who take Amitriptyline include most of the full range of
mobility, having a mobility score between 2 and 9. In terms of side effects, 4
respondents note no side effects with 2 noting tiredness. Based on the 6
respondents currently taking Amitriptyline, it is perceived as having benefits
and would be recommended to others. None of the respondents indicated that they take
Amitriptyline for bladder issues, but this medicine can be prescribed to treat
bedwetting in children by helping the bladder wall to relax.
Amitriptyline is
not reported in any HSP papers.
Gabapentin / Neurontin
6
respondents indicate that they take Gabapentin
for treatment of HSP symptoms, predominantly nerve pain and also pain. 7
respondents indicated that they have previously taken Gabapentin but no longer
take it, 2 indicating because of side effects and 2 because of lack of
perceived benefit.
The respondents who take Gabapentin use mobility aids to some degree
with mobility scores ranging between 3 and 8. In terms of side effects, all
respondents note side effects including tiredness/drowsiness (5 respondents),
dry mouth (1 respondent) and unpleasant dreams/thoughts (1 respondent). Based
on the 6 respondents currently taking Gabapentin, it is generally perceived as
having benefits and would generally be recommended to others.
Gabapentin is
reported in one HSP paper from 2007, in the European Journal of Neurology (PubMed
ID: 17539946)
although this indicates no difference in tests between Gabapentin and a
placebo.
Supplements and Diet
Respondents
were asked to give details of supplements that they take. 58 respondents answered
this question. 6 of these indicated that they did not take any supplements and
52 indicated that they took at least one. Generally people take up to 3
supplements with a small number taking more than this.
8
respondents are certain that they get benefits from taking magnesium to reduce
spasms/cramps and to relax muscles, including bladder muscles. There is one
paper which reports using magnesium glycerophosphate to reduce spasticity in paraplegia caused by MS (PubMed
ID: 11136367).
There were two respondents who were certain that taking cranberry tablets was
beneficial in maintaining a healthy bladder.
There was also
a general question about dietary changes. 39 respondents have not made dietary
changes and 32 people had made changes. There were 7 respondents who made
changes due to bowel issues, with some adding more or cutting down on fibre
and/or fruit/vegetables. One respondent avoids caffeine and alcohol due to
bladder issues. Low/No gluten and carbohydrate diets are mentioned as giving
benefits to several respondents, with one noting improved mobility on a gluten
free diet and another noting reduced inflammation with a low carb diet. One
respondent limits alcohol to assist with balance, and another notes caffeine and
sugar make their symptoms worse. 7 respondents have just made general health
improvements in their diet, including two partly as a result of weight gain from
reduced mobility.
It is worth
noting that the Spastic Paraplegia Foundation website indicates that “There are
no known studies indicating that vitamins or food supplements are an effective
treatment for HSP.” (https://sp-foundation.org/understanding-hsp-pls/treatments-and-therapies/).
Any readers wishing to make changes to their diet or to change any supplements
being taken may wish to consult their doctor.
Exercise and Relaxation
The final
section of the questionnaire looked at respondents exercise and relaxation
routines. Overall 90 respondents answered this question. The following table
shows the distribution of answers given.
Table 17 – Exercise and Relaxation
Stretches
|
Yoga
etc.
|
Weights
|
Power
plate etc.
|
Cardiovascular
|
Walk/Run/Cycle
|
Swimming
|
Massage
|
Aromatherapy
|
Acupuncture
|
Physiotherapy
|
Chiropractic
|
|
I do this
several times a day
|
8
|
0
|
0
|
1
|
1
|
1
|
0
|
0
|
0
|
0
|
1
|
0
|
I do this
daily
|
38
|
8
|
8
|
2
|
1
|
15
|
2
|
1
|
0
|
0
|
5
|
0
|
I do this
weekly
|
9
|
5
|
13
|
4
|
13
|
17
|
14
|
9
|
3
|
2
|
13
|
1
|
I do this
monthly
|
4
|
2
|
0
|
1
|
0
|
1
|
0
|
10
|
1
|
2
|
10
|
1
|
I do this
occasionally
|
17
|
3
|
13
|
2
|
8
|
20
|
23
|
13
|
3
|
4
|
10
|
5
|
I dont do
this
|
11
|
55
|
42
|
61
|
50
|
24
|
35
|
42
|
59
|
63
|
34
|
62
|
Total Answers
|
79
|
73
|
76
|
70
|
72
|
77
|
74
|
75
|
66
|
71
|
72
|
69
|
This shows
that stretches are the most common form of exercise being undertaken with over
85% of respondents doing this. Other activities which are commonly undertaken
include weights, cardiovascular machines, walking/running/cycling, swimming and
physiotherapy.
Of the 90
respondents only 1 did not undertake any of the activities or indicate other
activities. Respondents who undertake activities weekly or more frequently are
grouped together as undertaking that activity “regularly”. Overall 71
respondents undertake at least 1 activity regularly.
To look at
this in more detail Yoga/Tai-Chi/Pilates, Weights, Power plate/circulation booster,
walking/running/cycling, swimming and physiotherapy are grouped together as
“exercise”. Overall 81 respondents undertake at least one exercise activity,
and 66 of these undertake at least one of those activities regularly (weekly or
more often). Grouping the other activities together shows that these activities
are undertaken regularly, but the general take-up of the other activities is
lower than the exercise activities.
This
information shows that for people who do not use mobility aids at all (mobility
score 0 or 1) over 80% undertake at least one activity regularly. Activities
are likely to include walking/running/cycling. Many respondents also do
stretches and take part in swimming.
Other activities undertaken include physiotherapy, massage, yoga/tai-chi/pilates,
weights and cardiovascular.
Almost 80%
of people who use mobility aids some of the time (mobility score 2 or 3) take
part in at least one activity regularly. Activities are likely to include
stretches and walking/running/cycling. Many respondents also take part in
weights, swimming and physiotherapy.
Other activities undertaken include cardiovascular, massage and yoga/tai-chi/pilates.
Three
quarters of people who use sticks most or all of the time (mobility score 4 or
5) take part in at least one activity regularly. Activities are likely to
include stretches. Many respondents also take part in physiotherapy and
walking/running/cycling. Other activities undertaken include massage, swimming
and weights.
Two thirds
of people who use walking frames most or all of the time (mobility score 6 or
7) take part in at least one activity regularly. Activities are likely to
include stretches. Many respondents also take part in walking/running/cycling.
Other activities undertaken include physiotherapy and weights.
Almost 90%
of people who use wheelchairs most or all of the time (mobility score 8 or 9)
take part in at least one activity regularly. Many respondents take part in
stretches. Other activities undertaken include swimming, physiotherapy,
massage, weights, power plate/circulation booster and aromatherapy.
Like this? in other years:
Overview of all my surveys: http://hspjourney.blogspot.co.uk/p/my-on-line-resarch.html
2016: Fatigue, bladder, bowel & information: http://hspjourney.blogspot.co.uk/2017/02/2016-survey-results.html
2015: Modifications at home, depression, quality of life: http://hspjourney.blogspot.co.uk/2016/02/2015-survey-results.html
2013: Symptoms and misdiagnosis: http://hspjourney.blogspot.co.uk/2014/02/hsp-survey-results.html
Overview of all my surveys: http://hspjourney.blogspot.co.uk/p/my-on-line-resarch.html
2016: Fatigue, bladder, bowel & information: http://hspjourney.blogspot.co.uk/2017/02/2016-survey-results.html
2015: Modifications at home, depression, quality of life: http://hspjourney.blogspot.co.uk/2016/02/2015-survey-results.html
2013: Symptoms and misdiagnosis: http://hspjourney.blogspot.co.uk/2014/02/hsp-survey-results.html