Thanks are due to everyone who answered questions, manages HSP patient and facebook groups, and helped persuade people to take part. Several also helped by reviewing the translated questions.
Introduction
This
post presents the results of my seventh survey, launched in September 2019,
which repeats some of the questions asked in my 2014 survey, and offers the
opportunity to look at some results longitudinally. This survey also marks development
from last years multi-language question sheets, I set up the survey in
different languages so people could read and answer directly in their own
language. As previously, I have used Google Translate to translate questions
and answers between languages for this analysis.
Respondents
There
were 367 respondents who completed the survey, predominantly from the USA, UK
and Brazil. Table 1 shows the distribution of respondents’ locations;
Table 1 - Location of respondents
Location
|
Respondents
|
USA or Canada
|
82
|
South America
|
81
|
UK or Ireland
|
79
|
France
|
40
|
Other Europe
|
55
|
Australia
|
25
|
Rest of world
|
5
|
There
have been many more responses to this survey than my previous ones. The most
notable change from previous years is a large block of responses from Europe,
who completed the questions in French, Dutch, Spanish and Italian. Of the other
locations, the distribution of people around the world is similar, including those
from Brazil answering in Portuguese.
A
brief analysis shows that 150 people who completed this survey had also
completed at least one of my previous surveys, representing about 40% of
respondents, the proportion is increased from last year. A small number of
people, four, have completed all seven surveys. There are 22 respondents who
completed both the 2014 survey and this 2019 survey.
HSP Analysis
The first questions in
the questionnaire asked if people had HSP. 365 respondents answered this
question, selecting from the following options:
Table 2 – HSP Diagnosis
HSP
Diagnosis
|
Respondents
|
I have HSP - genetic test
|
199
|
I have HSP - other diagnosis
|
123
|
I do not know if I have HSP
|
7
|
I am answering on behalf of someone
else with HSP
|
36
|
There were 201 respondents
(55%) who knew which type of HSP they had, with the most common answer being
type 4. This is similar to last year, SPG 7 was second and SPG 11
took third place.
5) Wellbeing
In order to assess the
wellbeing of people with HSP respondents completed the Warwick-Edinburgh Mental
Well-being scale (WEMWBS). The scale is scored by summing the response to each item
answered on a 1 to 5 Likert scale. The minimum scale score is 14 and the
maximum is 70.
The
total score is higher for those with a better wellbeing. The average score for
the England and Scotland population is 51-52 with most scoring between 41 and
59.
There were 336
respondents who answered this question, with the average wellbeing score of 47.4,
which is slightly higher than the average score of 45.9 for people with HSP reported
in both 2017 and 2018. The scores ranged between 14 and 70. The average is
lower than UK population norms, however it is still within the “average”
definition and is also similar to those with a self-perceived health status of
“poor”.
As there
is a wide spread of locations for respondents, the wellbeing for each
geographical area has been calculated to identify if there is potential for
cultural differences to give rise to different wellbeing scores.
Table 6 – Regional Wellbeing
Area
|
Wellbeing
|
UK and Ireland
|
45.7
|
USA and Canada
|
48.0
|
South America
|
48.6
|
France
|
46.7
|
Other Europe
|
49.0
|
Australia
|
45.4
|
This
shows that people in Australia, the UK and Ireland have a slightly lower
wellbeing and those in Europe aside from France, UK and Ireland, and those in
South America have a slightly higher wellbeing. All scores are within 3 points
of the average suggesting that any regional differences are not significant.
Although
it is a small sample size, those who do not know if they have HSP have
wellbeing of 42.1,
more than 5 points below average, suggesting that uncertainties around
diagnosis have a negative impact on wellbeing. Having or not having other
family members with HSP did not influence wellbeing.
Mobility Analysis
All 367 respondents gave
answers to this question. The data allows identification of the mobility aids used the most regularly. Just over half
of respondents use walking sticks/poles/crutches/ canes and almost two fifths
use wheelchairs/mobility scoters and walking frames/rollators. FES is the
mobility aid used by the least number of people, with a take-up of about 5%.
Broadly these results are similar to those from previous years. Table 7 shows
these results, including the percentage of respondents. These add to more than
100% as some people use more than one type of mobility aid.
Table 7 – Use of mobility aids
Mobility
Aids Used - Summary:
|
Respondents
|
Percentage
|
Using sticks/poles/crutches/canes
|
186
|
51%
|
Using Wheelchair/Mobility Scooter
|
141
|
38%
|
Using Walking Frame/Rollator
|
77
|
21%
|
Using Orthotics/AFO/Insoles
|
99
|
27%
|
Using
|
17
|
5%
|
The results also allow
the distribution of respondents within a scale of mobility to be understood. I
have devised an “HSP mobility score” which then 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
In the remainder of
this paper, whenever “sticks” are referred to as a mobility aid, this term
includes poles, crutches and canes. Whenever “frames” are referred to this
includes both walking frames and rollators. Whenever “chairs” are referred to
this includes both wheelchairs and mobility scooters. Whenever AFO is referred
to is includes orthotics, AFO and insoles. The results are simplified into five broader groups;
Table 8 – Overview of mobility aids used
Mobility
Aids Used - Overview:
|
Respondents
|
Percentage
|
Mobility Score
|
Wellbeing
|
Those without aids
|
71
|
19%
|
0-1
|
47.9
|
Those who use mobility
aids some of the time
|
88
|
24%
|
2-3
|
47.0
|
Those who use sticks
most/all of the time
|
101
|
28%
|
4-5
|
49.0
|
Those who use frames
most/all of the time
|
39
|
11%
|
6-7
|
45.4
|
Those who use chairs
most/all of the time
|
68
|
19%
|
8-9
|
46.2
|
This
shows that there is a wide range of mobility aids used by the respondents to
the questionnaire, covering all mobility scores. Overall the results are
similar to previous years with broadly an even split of numbers of people between
bands.
The
wellbeing scores do not vary significantly across types of walking aid being
used. This result is similar to the result from 2017, but different from that
from 2018 which showed that those using wheelchairs all or most of the time had
a lower wellbeing. The distribution of wellbeing scores is shown for all respondents
in the following figure, split by mobility score.
Medication
I wanted to explore
the medication which people take for HSP. I wanted to find the reasons that people
take medicines for, and how effective they perceive those medicines to be. I
allowed people to enter whatever they wanted and enter details for up to 5 medicines,
with a comment box to note any others.
People
answered the following questions;
- What is the name
of the medication?
- Which HSP symptoms
do you take the medication for?
- How do you take the
medicine?
- Choice of: By
mouth, Injection, Pump, On the skin, Other
- Do you notice
benefits from the medication?
- Choice of: High
levels of benefit, Medium levels of benefit, Low levels of benefit, Not
sure, No benefit noticed
- Have the benefits
changed over time?
- Do you notice side
effects from the medication?
- Choice of: Lots
of side effects, Some side effects, No side effects
- What are the main
side effects you notice from the medication?
- Why did you start
taking the medication?
Initially,
a summary of all medication is given, looking at overall numbers of medication
and why these are being taken. Each of the main groups of medication is then
examined, and an overall summary is given at the end of the section.
Medication – Overall
Summary
In total 320
respondents answered this question. There were 274 people who indicated that
they took at least one medication and 46 respondents who indicated that they
did not take any medication at all. This indicates that around 85% of people
are prescribed at least one form of medication for their HSP, and this
proportion is slightly higher than reported in 2014. Those who do not take
medication either have not started taking medication at all or have stopped
taking medicine, either because they do not like the side effects of the
medicine or because they are not noticing any benefits of the medicine. The following grid shows the distribution of
the number of medicines against mobility.
Table 12 – Number of respondents, number of
medicines against mobility.
Mobility
Score
|
No medicine
|
1 Medicine
|
2 Medicines
|
3 Medicines
|
4 Medicines
|
5 Medicines
|
6 Medicines
|
Total
|
0-1
|
16
|
26
|
12
|
0
|
2
|
1
|
1
|
58
|
2-3
|
14
|
28
|
19
|
9
|
2
|
5
|
1
|
78
|
4-5
|
10
|
35
|
22
|
8
|
8
|
2
|
0
|
85
|
6-7
|
4
|
9
|
10
|
5
|
2
|
5
|
1
|
36
|
8-9
|
2
|
16
|
19
|
15
|
3
|
6
|
2
|
63
|
Total
|
46
|
114
|
82
|
37
|
17
|
19
|
5
|
320
|
Wellbeing
|
50.6
|
48.9
|
46.8
|
44.7
|
44.2
|
44.8
|
37.6
|
This shows
that generally those who do not take medication are the most mobile although there
are several whose mobility is not affected who take several medications. For
those whose mobility is affected by HSP there is a reasonable spread of the numbers
of medication taken across the mobility bands. The most common number of
medicines taken is 1 or 2.
The
data shows that those who do not take medicine have a significantly better
wellbeing and those who take the larger number of medicines have lower
wellbeing.
The
medicines fall into six general groups, with a number of other medications
grouped together in a seventh group. The group are:
Table 13 – Medication Groups
Symptom
|
Number of medicines
|
Number of people
|
Spasticity/spasms
|
21
|
327
|
Pain/nerve pain
|
33
|
109
|
Bladder
|
12
|
64
|
Depression/anxiety
|
10
|
17
|
Bowel
|
3
|
8
|
Sleep/fatigue
|
2
|
2
|
Other
|
19
|
23
|
Total
|
100
|
550
|
The
table shows that there are more people taking medicine for spasticity or spasms
than in the other groups, whereas there is a higher number of types of medicine
used to treat pain or nerve pain.
The
following table indicates how many people are taking each of the most commonly
used medicines, showing medicines where at least 10 people are using them.
Table 14 – Most common medicines
Medication
|
No. People taking medication
|
Baclofen (muscle relaxant)
|
178
|
Botulinum toxin / Botox (muscle relaxant)
|
26
|
Gabapentin / Neurontin (anticonvulsant)
|
24
|
Clonazepam (muscle treatment)
|
23
|
Oxybutynin (bladder)
|
22
|
Tizanidine / Zanaflex (muscle relaxant)
|
21
|
Pregablin / Lyrica (anticonvulsant)
|
14
|
Paracetamol (pain)
|
13
|
Diazepam (muscle/anticonvulsant)
|
12
|
Amitriptyline / Elavil (pain/antidepressant/bladder)
|
11
|
Mirabegron (bladder)
|
11
|
Solifenacin (bladder)
|
10
|
This
shows that baclofen is by far the most commonly used medication for HSP with
around half of people taking it, and accounting for around one third of all
medication taken. All of the other medications are taken by less than 10% of
people, and account for less than 5% of medication taken.
Spasticity and
Spasms
Almost
60% 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 full list of medications in the group is
shown in the following table, with descriptions of the medications taken from
the UK NHS, drugs.com and other websites.
Table 15 – 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.
|
178
|
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.
|
26
|
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).
|
24
|
Clonazepam
|
Clonazepam belongs to
a group of medicines called benzodiazepines. It's used to control seizures or
fits due to epilepsy, involuntary muscle spasms, panic disorder and sometimes
restless legs syndrome.
|
23
|
Tizanidine / Zanaflex
|
Tizanidine reduces
muscle tone. This helps to reduce painful muscle spasm. The effect of
Tizanidine usually lasts for a few hours.
|
21
|
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.
|
12
|
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
|
11
|
Dantrolene
|
Dantrolene is a muscle
relaxer that is used to treat muscle spasticity (stiffness and spasms) caused
by conditions such as a spinal cord injury, stroke, cerebral palsy, or
multiple sclerosis.
|
9
|
Ziclague
|
Ziclague is intended
for supporting treatment in states of muscle spasticity. It relaxes the
muscles (decreases muscle tone) in a dose-dependent manner.
|
7
|
Cyclobenzaprine / Flexeril
|
Flexeril is a muscle
relaxant. It works by blocking nerve impulses or pain sensations that
are sent to your brain.
|
5
|
Dalfampridine / Ampyra / Fampridine
|
Ampyra is used to
improve walking in patients with multiple sclerosis (MS). It produced an
increase in walking speed in clinical trials. Exactly how it works is not
known. It is thought to increase nerve function. It reduces fatigue.
|
5
|
L-DOPA / Levodopa
|
Levodopa is used to
treat the stiffness, tremors, spasms, and poor muscle control of Parkinson’s
disease.
|
4
|
Amantadine
|
Amantadine is a drug
used in the treatment of fatigue in multiple sclerosis. Amantadine may reduce
involuntary movements (dyskinesia) caused by other Parkinson’s drugs. Amantadine
can also help to reduce stiffness you may experience in your muscles.
|
3
|
Lorazepam
|
Lorazepam belongs to a
group of drugs called benzodiazepines. It affects chemicals in the brain that
may be unbalanced in people with anxiety. Lorazepam is used to treat anxiety
disorders and seizure disorders and can be used for relaxation of excessive
muscle rigidity and contractions.
|
2
|
Benserazide
|
Benserazide is a
peripheral decarboxylase inhibitor that increases the amount of levodopa
crossing into the brain and its subsequent conversion to dopamine.
|
1
|
Thiocolchicoside
|
Thiocolchicoside
(Muscoril, Myoril, Neoflax) is a muscle relaxant with anti-inflammatory and
analgesic effects.
|
1
|
Tolperisone
|
Tolperisone (trade
name Mydocalm among others) is a centrally acting skeletal muscle relaxant
used for the treatment of increased muscle tone associated with neurological
diseases.
|
1
|
Dronabinol
|
Dronabinol, also known
as Marinol and Syndros, is a trade name for a specific form of
tetrahydrocannabinol, sold as an appetite stimulant, antiemetic, and sleep
apnea reliever. It may possess analgesic, antispasmodic, and muscle relaxant
activity.
|
1
|
Nortriptyline
|
Nortriptyline is a tricyclic
antidepressant. It affects chemicals in the brain that may be unbalanced in
people with depression. Nortriptyline is used to treat symptoms of
depression.
|
1
|
Mantidan
|
Mantidan is an
antidyskinetic medicine. It is used to treat Parkinson's disease and its
symptoms, including dyskinesia (sudden uncontrolled movements). By improving
muscle control and reducing stiffness, this medicine allows more normal
movements of the body as the disease symptoms are reduced.
|
1
|
Carbamazepine
|
Carbamazepine is an anticonvulsant.
It works by decreasing nerve impulses that cause seizures and nerve pain,
such as trigeminal neuralgia and diabetic neuropathy. Carbamazepine is also
used to treat bipolar disorder.
|
1
|
Riluzole
|
Riluzole is used to treat
amyotrophic lateral sclerosis (ALS). Riluzole helps to slow down the
worsening of the disease and prolong survival.
|
1
|
Of
these medicines, those with at least 20 people taking are examined in further
detail. All these medications are reviewed in respect of published HSP
treatment information at the end of Section 8.
Baclofen
There are 178 respondents
who indicate that they take Baclofen for HSP symptoms. The symptoms, as
described by respondents, fall into two main areas; spasticity for 123
respondents, clonus for 22 respondents,
stiffness for 10 respondents, and there are 14 respondents who describe another
symptom which they take baclofen for. The majority (156) indicate that they
take baclofen in tablet form. There were 18 people who indicate that they take
it using a pump.
Three
quarters of people note that they get a benefit from this medicine. One fifth
indicate that benefits are high, and one third each indicate that benefits are
medium or low. 15% indicate that they don’t know if they get any benefits, and
the remainder (less than 10%) indicate that they do not get any benefits from
Baclofen. Over half of people say that the benefits of Baclofen have not
changed over time, around 10% do not know if benefits have changed and the
remaining 40% saying benefits have changed, of which one quarter (10%) of
people indicate that the benefits have gotten smaller over time.
Looking
at side effects, half of respondents indicate that they do not get any side
effects, around 45% indicate that they get some side effects, with the
remaining 5% getting many or lots of side effects. The key side effects noted
are sleepiness, increased fatigue or increased tiredness. Other side effects
mentioned include bowel/urine issues, nausea, effects on focus and mood, and
increased pain.
There
were 46 other respondents who have taken baclofen in the past but have stopped
taking it now. 32 of these described why they no longer take baclofen; 14
describe that the were not noticing any benefit from it, 13 indicated that they
didn’t want the side effects, and there were 5 who thought baclofen had an
adverse effect on their strength or gait.
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
2018, with just over 25 papers altogether.
Botulinum Toxin Type A
There are 26 respondents
who indicate that they take Botox for HSP symptoms. The symptoms, as described,
are predominantly for spasticity with a few people indicating they take it to treat
their bladder, and three respondents describing taking it for other symptoms.
All indicate that their botox is injected.
The
majority of people note that they get a benefit from this medicine. Half indicate
that benefits are high, one third indicate medium benefits, with the remainder
indicating low benefit.
Looking
at side effects, most respondents indicate that they do not get any side
effects, with a small number indicating some side effects, principally around how
botox affects their gait.
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
2019, with 8 papers altogether.
Gabapentin
There
are 24 respondents who indicate that they take Gabapentin for HSP symptoms. The
symptoms, as described by respondents, are predominantly for pain and cramp,
with a few indicating that they take it for spasticity. All indicate that their
gabapentin is taken orally.
Most
people note that they get a benefit from this medicine. Half indicate that
benefits are medium, and around one quarter each indicating high or low
benefits, with the remainder not sure.
There
is a mix of responses around side effects, with some indicating lots of side
effects and others indicating no side effects. The side effects mentioned most
often are around sleepiness, increased fatigue or increased tiredness.
There
are 11 respondents who indicated that they have taken Gabapentin in the past
but no longer take, with the main reasons given being around side effects.
Gabapentin
is one of the recognised treatments for HSP. The first paper to use Gabapentin
seems to date from 2007 in the European Journal of Neurology (Pubmed ID: 17539946). There are papers
into 2019.
Clonazepam
There are 24 respondents
who indicate that they take Clonazepam for HSP symptoms. The symptoms, as
described by respondents, are predominantly for spasms, with a few indicating
that they take it for sleep, and other symptoms. All indicate that their clonazepam
is taken orally.
Most
people note that they get a benefit from this medicine. One third each indicate
that benefits are medium or high, with the remainder showing low benefits, not
sure or no benefit.
There
is a mix of responses around side effects, with some indicating lots of side
effects and others indicating no side effects. The side effects mentioned most
often are around sleepiness or increased fatigue, with others showing mood
swings or weakness.
Clonazepam
does not feature in published papers relating to HSP.
Tizanidine / Zanaflex
There
are 21 respondents who indicate that they take Tizanidine for treatment of HSP
symptoms, for both spasticity and spasms. All indicate that their Tizanidine
is taken orally.
Most
people note that they get a benefit from this medicine. Three sevenths indicate
medium benefits, with another one seventh noting high benefits. The remaining three sevenths each indicate
that benefits are low, they are not sure about benefits or they get no benefit.
There
is a mix of responses around side effects, with some indicating lots of side
effects and others indicating no side effects. The side effects mentioned most
often are around sleepiness or increased fatigue, with others showing issues
with balance, pain or constipation. 12 respondents indicated that they have previously
taken Tizanidine but no longer take it, either due to side effects or to no
perceived benefits.
Tizanidine
is reported as having benefits for spastic paresis in 1982, in the Journal of
the Neurological Sciences (PubMed ID: 7035623). It is mentioned in passing in treatment of
SPG7 and SPG3A, but no trials are reported.
Pain
Respondents
taking medicine for pain form the second largest group of around one fifth of
all the medication being taken. The pain medication being taken falls into two
main groups, one group is for pain, whereas the other group is for nerve pain,
pain from spasms, and other HSP symptoms.
The
first group (pain) includes common pain medication, some of which is available
over the counter, e.g. paracetamol and ibuprofen, and others are prescription
medication like fentanyl and morphine. I have not undertaken further analysis
on this group.
The
second group includes some medications that are used to treat effects of HSP,
and the following table shows a subset of these medications, including those
taken by the highest numbers of people and those where there are reports of
using it to treat HSP.
Table 16 – Pain Medication
Medication
|
Description
|
People taking medication
|
Pregabalin/ Lyrica
|
Pregabalin is an
anti-epileptic drug, also called an anticonvulsant. It works by slowing down
impulses in the brain that cause seizures. Pregabalin also affects chemicals
in the brain that send pain signals across the nervous system. Pregabalin is
also used to treat peripheral and central neuropathic pain.
|
14
|
Duloxetine
|
Duloxetine is an
antidepressant medicine. It's used to treat depression and anxiety. It's also
used to treat nerve pain, such as fibromyalgia, and can be used to treat
stress urinary incontinence in women.
|
9
|
Pramipexole
|
Pramipexole is
medication used to treat Parkinson's disease and restless legs syndrome. It
may be used alone or together with levodopa. It is taken by mouth.
|
7
|
Oxycodone
|
Oxycodone is an opioid
medication used for treatment of moderate to severe pain. It is usually taken
by mouth, and is available in immediate-release and controlled-release
formulations.
|
3
|
Nabilone
|
Nabilone is a
synthetic cannabinoid with therapeutic use as an antiemetic and as an adjunct
analgesic for neuropathic pain.
|
1
|
Nabiximols
|
Nabiximols is intended
to alleviate neuropathic pain, spasticity, overactive bladder, and other
symptoms of multiple sclerosis.
|
1
|
Given
the sample sizes, analysis has not been undertaken for those medications but all these medications are
reviewed in respect of published HSP treatment information at the end of
Section 8
Bladder
Respondents
taking medicine for bladder issues forms the third largest group of around 1/8
of all the medication being taken. The three medications used by the most are
Oxybutynin, Mirabegron and Solifenacin. Eight other medications were mentioned,
taken by 4 or fewer people. An analysis of bladder medication has not been
undertaken as part of this analysis.
Depression
Respondents
taking medicine for depression forms the fourth largest group of around 3% of
all the medication being taken. There are ten different antidepressant
medications being taken by the 17 respondents who indicate taking this type of
medication. These sample sizes are too small to allow further analysis to be
undertaken.
Other Symptoms
Respondents
taking medicine for other symptoms forms the remainder of medication being
taken, totalling 6%. This includes 8 respondents taking medication for bowel
issues, 3 respondents take medication to help sleep or reduce fatigue, as 23
others who take a range of medication for a variety of reasons. Several of
these are worthy of note:
·
Three
respondents are taking Noscapine with the aim of stopping the progress of HSP
·
Three
respondents take Omeprazole to protect their stomach/gut from other drugs they are
taking.
·
One
respondent takes Olanzapine to improve their cognitive function
·
One
respondent takes Nuedexta to treat the pseudobulbar effect (a less common HSP
symptom).
·
One
respondent takes Liraglutide to help with weight loss to reduce the load on
their legs.
·
One
respondent takes fusidic acid to treat skin problems bought on by HSP.
Medication Review
The table below shows all of the medications being taken for spasticity
and spasms for HSP and selected medication from other areas. The table reports
if the medication is noted as being used to treat HSP by reference to HSP
support/research group websites and other similar places. The table also
identifies if the medicine has been reported in the literature as being used to
treat HSP, by search of the PubMed database.
Table 17 – HSP Treatment Review
Medication
|
People taking medication
|
HSP Treatment? (HSP groups)
|
HSP Treatment? (PubMed)
|
Baclofen
|
178
|
Yes, many
|
|
Botulinum toxin A / Botox
|
26
|
Yes, many
|
|
Gabapentin
|
24
|
||
Clonazepam
|
23
|
No
|
|
Oxybutynin
|
22
|
No
|
|
Tizanidine / Zanaflex
|
21
|
||
Pregabalin
|
14
|
No
|
|
Diazepam
|
12
|
||
Amitriptyline
|
11
|
No
|
|
Mirabegron
|
11
|
No
|
|
Solifenacin
|
10
|
No
|
|
Dantrolene
|
9
|
||
Duloxetine
|
9
|
No
|
|
Ziclague
|
7
|
No
|
|
Pramipexole
|
7
|
No
|
|
Cyclobenzaprine
|
5
|
No
|
|
Dalfampridine / Ampyra
|
5
|
||
L-DOPA / Levodopa
|
4
|
||
Amantadine
|
3
|
No
|
|
Oxycodone
|
3
|
No
|
|
Noscapine
|
3
|
||
Omeprazole
|
3
|
No
|
No
|
Lorazepam
|
2
|
No
|
No
|
Benserazide
|
1
|
No
|
No
|
Thiocolchicoside
|
1
|
No
|
No
|
Tolperisone
|
1
|
No
|
No
|
Dronabinol
|
1
|
No
|
No
|
Nortriptyline
|
1
|
No
|
|
Mantidan
|
1
|
No
|
No
|
Carbamazepine
|
1
|
No
|
|
Riluzole
|
1
|
No
|
|
Nabilone
|
1
|
No
|
No
|
Nabiximols
|
1
|
No
|
|
Olanzapine
|
1
|
No
|
|
Nuedexta
|
1
|
No
|
No
|
Liraglutide
|
1
|
No
|
No
|
fusidic acid
|
1
|
No
|
No
|
This
table shows that there is no consistent source of information for the treatment
of HSP symptoms, and to find particular results often requires a lot of hunting
around. Several of the more commonly used medications do not have HSP specific trial
results published, which may prevent their consideration by medical
practitioners who are not so familiar with HSP. There may also be regional
variations in availability of or guidelines for prescribing certain medicines,
which has not been looked at.
Some
of the treatments being tried by individuals are not reported at all, and this
shows that some practitioners are being innovative and trying out different
medications.
Exercise and
Relaxation
The next
section of the survey looked at respondents exercise and relaxation routines.
Overall 362 respondents answered this question, although not all respondents
answered the question for all of the activities. There are at least 249 answers
for each activity.
The
following table shows the distribution of answers given, and respondents who undertake
activities weekly or more frequently are grouped together as undertaking that
activity “regularly”, and the percentage of respondents is shown.
Table 18 – Exercise and Relaxation
Multi-Per-Day
|
Daily
|
Weekly
|
Monthly
|
Occasionally
|
Dont
|
Total
|
Regular
|
|
Stretches
|
45
|
138
|
74
|
2
|
47
|
31
|
337
|
76%
|
Walking/Running
|
42
|
101
|
44
|
1
|
28
|
85
|
301
|
62%
|
Physiotherapy
|
7
|
25
|
119
|
14
|
48
|
93
|
306
|
49%
|
Music
|
44
|
46
|
28
|
12
|
34
|
103
|
267
|
44%
|
Cycling/Manual wheelchair
|
12
|
37
|
42
|
7
|
35
|
146
|
279
|
33%
|
Weights
|
4
|
22
|
39
|
6
|
31
|
167
|
269
|
24%
|
Other
|
12
|
8
|
18
|
7
|
14
|
105
|
164
|
23%
|
Swimming
|
5
|
9
|
45
|
7
|
65
|
152
|
283
|
21%
|
Cardiovascular gym machines
|
2
|
21
|
30
|
2
|
20
|
187
|
262
|
20%
|
Yoga/Pilates/Tai Chi
|
3
|
13
|
39
|
4
|
21
|
192
|
272
|
20%
|
Gardening
|
3
|
14
|
34
|
13
|
40
|
159
|
263
|
19%
|
Massage
|
6
|
8
|
29
|
16
|
42
|
170
|
271
|
16%
|
Sauna/Hot bath/Steam room
|
5
|
6
|
21
|
6
|
36
|
187
|
261
|
12%
|
Workout routine/DVD/video
|
2
|
5
|
7
|
2
|
15
|
230
|
261
|
5%
|
Aromatherapy
|
2
|
6
|
0
|
1
|
12
|
228
|
249
|
3%
|
Ball/racket sports
|
2
|
0
|
6
|
3
|
8
|
236
|
255
|
3%
|
Dancing
|
1
|
1
|
5
|
2
|
19
|
224
|
252
|
3%
|
Power plate/Circulation booster
|
0
|
4
|
3
|
0
|
11
|
236
|
254
|
3%
|
Acupuncture
|
0
|
1
|
2
|
7
|
21
|
221
|
252
|
1%
|
This
shows that stretches are the most common form of exercise being undertaken with
over 90% of respondents doing this, and over 75% doing this regularly. Other
activities which are commonly undertaken include walking/running, physiotherapy,
music and cycling/manual wheelchair with more than one third doing regularly. A
more in depth analysis of these activities is given below. Additionally, weights,
swimming, cardiovascular gym machines, and yoga/pilates/tai chi are regularly undertaken
by more than a fifth of respondents.
Overall,
339 respondents undertake at least 1 activity regularly and 23 respondents do
not undertake any of the activities regularly.
There are 4 respondents who indicated that they don’t take part in any
of the activities listed at all, and didn’t indicate any other activities which
they do take part in. Their mobility score ranges between 4 and 9.
Examining
the set of answers for those who indicated “Other”, things that are being
undertaken on a daily basis include: bowling, VR/video games, arts and crafts,
painting/drawing, meditation, knitting, musical instruments, prayer and sculpting.
Things that are generally being undertaken on a regular basis include: archery,
pets, walking dogs, photography, reading, working, movies, fencing,
mindfulness, cooking, learning languages, bird watching, skiing, driving, diving,
singing and shopping,
Wellbeing
The
following table shows the activities and frequencies with the five highest and three
lowest wellbeing scores where at least 20 people take part.
Table 19 – Wellbeing from Exercise and
Relaxation
Activity
|
Frequency
|
Wellbeing
|
Cardiovascular gym machines
|
Daily
|
51.0
|
Music
|
Weekly
|
50.8
|
Music
|
Occasionally
|
50.7
|
Gardening
|
Weekly
|
50.3
|
Acupuncture
|
Occasionally
|
50.2
|
Cycling/Manual wheelchair
|
Weekly
|
44.8
|
Yoga/Pilates/Tai Chi
|
Occasionally
|
44.5
|
Walking/Running
|
Occasionally
|
44.5
|
The
table shows that those who use cardiovascular gym machines on a daily basis
have the highest wellbeing. Those who listen/take part in music on a weekly or
occasionally basis also have a wellbeing which is more than 3 points better
than average. Weekly gardening and occasional acupuncture are shown to have
higher wellbeing. Weekly cycling/manual wheelchair, occasional yoga/pilates/tai
chi and occasional walking/running are shown to have lower wellbeing.
All
other activities and frequencies fall between this range. Looking at music as a
whole, those who don’t listen/take part in music have a wellbeing of 45.8, more
than 5 points below those who do this at least weekly. Similarly those who go
walking/running weekly have a wellbeing of 49.1, almost 5 points higher than
those who do this occasionally.
The questions
do not allows respondents to give reasons why they choose to do things at a
certain frequency, and so conclusions about how the frequency of activities
affect wellbeing cannot be drawn. My supposition is that people who regularly
undertake an activity they enjoy have a higher wellbeing than those who do not,
as evidenced with the cardiovascular gym machines, music and gardening
activities.
It
is more difficult to identify to draw conclusions about how activities affect
the lower end of wellbeing scale. People may have lower wellbeing because they
are not able to undertake the activities they enjoy as often as they would like
to, as shown by those who walk/run weekly having a higher wellbeing than those
who do this occasionally.
People
described activities which they would like to be able to do, but cannot. The
most common answer was running with 31 people who would like to do this, other
common answers included hiking, swimming, walking, dancing and cycling.
Additionally, people also described activities which they have had to stop
doing as a result of their HSP. The most common answer was walking with 41
people who have stopped doing this. Other common answers include running,
hiking, working, cycling and sports generally.
Most Important Activities
Respondents were asked
to identify those activities which they felt were most important for exercise,
relaxing and flexibility.
Summary of Exercise and Relaxation
Results
People who do not use mobility aids at all (mobility
score 0 or 1) have regular activities which are likely to include walking or running and
stretches. Many respondents also do physiotherapy and music. Other activities
undertaken regularly include yoga/tai-chi/pilates.
Those who use mobility aids some of the time (mobility score 2 or 3) regular activities
are likely to include stretches and walking/running. Many respondents also take
part in physiotherapy and music. Other activities undertaken regularly include cycling/manual
wheelchair and weights.
When people
use sticks most or all of the time (mobility score 4 or 5), regular activities
are likely to include stretches and walking/running. Many respondents also take
part in physiotherapy and music. Other activities undertaken regularly include cycling/manual
wheelchair and weights.
Where people
use walking frames most or all of the time (mobility score 6 or 7), regular
activities are likely to include stretches. Many respondents also take part in
walking/running and physiotherapy. Other activities undertaken regularly include
cycling/manual wheelchair, weights, cardiovascular gym machines and music.
For
those who use wheelchairs most or all of the time (mobility score 8 or 9) regular
activities are likely to include stretches. Many respondents also take part in cycling/manual
wheelchair, physiotherapy and music. Other activities undertaken regularly include
walking/running.
Overall,
these patterns are similar to those reported in 2014.
Life-space Tracking
Respondents described how far they move about and how often they do this. There are 326 respondents who answered this question.
Table 28 – Life space tracking
Frequency
|
Leave bedroom
|
Go outside
|
Local neighbourhood
|
Local town
|
Further than town
|
Every
day
|
318
|
231
|
139
|
69
|
35
|
5-7
days a week
|
5
|
51
|
54
|
34
|
18
|
2-4
days a week
|
2
|
31
|
52
|
50
|
26
|
Weekly
|
1
|
10
|
46
|
64
|
29
|
Monthly
|
0
|
0
|
11
|
50
|
77
|
Less
often than monthly
|
0
|
2
|
7
|
34
|
106
|
I
don’t do this
|
0
|
1
|
17
|
25
|
35
|
- This shows that 98% of people with HSP leave the room they sleep in every day. There are 2% of people who leave this room less frequently, but all leave at least weekly.
- 71% of respondents go outside every day, and 25% go outside multiple times per week. There are 3% who do this weekly and 1% who do this less often than monthly or not at all.
- There are 43% of people who go to their local neighbourhood every day, and 33% who go multiple times per week. 19% go weekly or less often, and 5% who do not go at all.
- When travelling beyond the local neighbourhood, 21% do this every day, 26% do this multiple times per week, 45% doing this less often and 8% not doing this at all
- Travel further afield occurs less frequently, with 11% doing this every day, 14% doing this multiple times per week, 65% going less often and 11% not going at all.
· Examining the results when split by mobility scores shows no clear
patterns, indicating that travel decisions are not dependent on mobility. The
wellbeing scores have been calculated where there are more than 20 people in a
group:
Table 29 – Life space tracking - wellbeing
Frequency
|
Leave bedroom
|
Go outside
|
Local neighbourhood
|
Local town
|
Further than town
|
Every
day
|
48.1
|
49.2
|
50.0
|
51.6
|
51.7
|
5-7
days a week
|
-
|
45.0
|
47.2
|
48.5
|
-
|
2-4
days a week
|
-
|
47.4
|
47.3
|
48.3
|
49.0
|
Weekly
|
-
|
-
|
47.0
|
47.3
|
49.9
|
Monthly
|
-
|
-
|
-
|
45.5
|
47.1
|
Less
often than monthly
|
-
|
-
|
-
|
47.3
|
46.8
|
I
don’t do this
|
-
|
-
|
-
|
46.7
|
48.5
|
The analysis shows that the highest wellbeing is
found in those people who travel the furthest every day. All other situations
are within 3 points of the average score, so it is interesting to note that
those who can do things every day have a higher wellbeing than those who
cannot, but there are no clear patterns beyond this.
Various interesting comments are made about this, with several
indicating that they need help using aeroplanes. Many have adapted cars or
mobility scooters and can travel independently whereas others rely on another
to drive them places. Others note that they need help with transfers, and rely
on this to move anywhere, whereas others are children and rely on their
parents/carers to help them get around. Some people need help lifting and
carrying things rather than getting around, and some indicate that they don’t
get out as much as they would like because they have caring responsibilities.
Life with HSP
In recent surveys I have asked if people considered themselves disabled
or not. I added to that with a set of similar questions exploring life with
HSP.
Do you Consider Yourself to be Disabled?
There
are 365 respondents who answered this question, as shown in the following grid.
Wellbeing scores are also calculated and shown in brackets where there is a
small sample size (less than 20 people), and are not shown for very small
samples (less than 10 people).
Table 31 – Identify as Disabled?
Consider
Self Disabled?
|
Yes
|
No
|
Wellbeing Yes
|
Wellbeing No
|
All
|
246 (67%)
|
119
|
46.4
|
49.7
|
Mobility 0-1
|
22 (31%)
|
49
|
48.4
|
47.8
|
Mobility 2-3
|
55 (63%)
|
33
|
45.3
|
50.0
|
Mobility 4-5
|
76 (75%)
|
25
|
48.1
|
52.0
|
Mobility 6-7
|
34 (87%)
|
5
|
44.5
|
-
|
Mobility 8-9
|
59 (89%)
|
7
|
45.6
|
-
|
British Isles
|
66 (86%)
|
11
|
44.6
|
(52.5)
|
North America
|
59 (74%)
|
21
|
47.3
|
49.8
|
South America
|
11 (17%)
|
53
|
(40.5)
|
50.3
|
France
|
32 (86%)
|
5
|
46.2
|
-
|
Europe
|
39 (80%)
|
10
|
50.2
|
(44.2)
|
Australia
|
19 (76%)
|
6
|
(45.5)
|
-
|
Two
thirds of respondents consider themselves to be disabled and one third do not. Although
the proportion of people who identify as disabled increases with reduced
mobility, there are both people who do not use mobility aids who consider
themselves disabled and those who use a wheelchair all or most of the time who
do not consider themselves to be disabled. This indicates that mobility is not
the only factor in individuals deciding if they are disabled or not.
Those
who consider themselves to be disabled have a lower wellbeing score than those
who do not. Once mobility aids are used there is a more clear distinction
between wellbeing, with those identifying as disabled and using mobility aids
having lower wellbeing than those who do not identify as disabled but who do
use mobility aids.
Identifying
as disabled may have cultural differences across the world, and this has been
examined in terms of wellbeing. Of note, the proportion of people identifying
as disabled in South America is considerably lower than elsewhere in the world.
In Europe (excluding UK, Ireland and France) those that identify as disabled
have a higher wellbeing than those who do not identify as disabled, although
this is a small sample size and the result should be treated with caution.
Do you Consider Yourself to be Lonely?
This
question aimed to identify one often reported aspect of having a rare disease,
loneliness. 361 respondents answered this question, as shown in the following
grid. Wellbeing scores are also calculated, and shown in brackets where there
is a small sample size, and not shown for very small samples.
Table 32 – Identify as Lonely?
Consider
Self Lonely?
|
Yes
|
No
|
Wellbeing Yes
|
Wellbeing No
|
All
|
116 (32%)
|
245
|
39.5
|
51.3
|
Mobility 0-1
|
16 (23%)
|
55
|
(38.2)
|
51.2
|
Mobility 2-3
|
29 (34%)
|
57
|
37.7
|
52.3
|
Mobility 4-5
|
24 (24%)
|
77
|
40.7
|
51.7
|
Mobility 6-7
|
16 (42%)
|
22
|
(39.6)
|
50.3
|
Mobility 8-9
|
16 (50%)
|
16
|
(41.2)
|
(49.7)
|
British Isles
|
21 (28%)
|
55
|
35.8
|
49.5
|
North America
|
32 (40%)
|
48
|
40.7
|
52.8
|
South America
|
23 (36%)
|
41
|
40.4
|
53.2
|
France
|
9 (25%)
|
27
|
-
|
48.6
|
Europe
|
12 (25%)
|
36
|
(41.1)
|
51.5
|
Australia
|
10 (40%)
|
15
|
(35.8)
|
(51.9)
|
This
shows that one third of people with HSP consider themselves to be lonely.
Loneliness tends to occur more often in those whose mobility is more restricted.
There
is a significant difference in wellbeing between those who are lonely and those
who are not. The averages for each are more than 5 points from the average
wellbeing suggesting a significant effect.
The
pattern is consistent across different areas of the world.
Do you Consider Yourself to be Isolated?
Although
there is an overlap between the meanings of lonely and isolated, this question
was asked to identify if the perceptions of having HSP change depending on how
you describe them. 362 respondents answered this question, as shown in the
following grid. Wellbeing scores are also calculated and shown in brackets
where there is a small sample size and not shown for very small samples.
Table 33 – Identify as Isolated?
Consider
Self Isolated?
|
Yes
|
No
|
Wellbeing Yes
|
Wellbeing No
|
All
|
107 (30%)
|
255
|
39.0
|
50.9
|
Mobility 0-1
|
12 (17%)
|
59
|
(33.4)
|
50.6
|
Mobility 2-3
|
25 (29%)
|
61
|
36.0
|
51.5
|
Mobility 4-5
|
24 (24%)
|
77
|
41.9
|
51.3
|
Mobility 6-7
|
16 (42%)
|
22
|
(39.6)
|
50.3
|
Mobility 8-9
|
14 (44%)
|
18
|
(41.2)
|
(49.9)
|
British Isles
|
21 (28%)
|
55
|
36.6
|
49.2
|
North America
|
34 (43%)
|
46
|
40.8
|
53.3
|
South America
|
17 (27%)
|
47
|
(37.8)
|
52.5
|
France
|
6 (17%)
|
30
|
-
|
48.9
|
Europe
|
8 (16%)
|
41
|
-
|
50.5
|
Australia
|
8 (32%)
|
17
|
-
|
(49.2)
|
This
shows that one third of people with HSP consider themselves to be isolated. Isolation
tends to occur more often in those whose mobility is more restricted. Although
the pattern is similar to the loneliness question there is a stronger pattern
than was shown with the loneliness question. Results are also consistent across
different areas of the world. This suggests that there is little difference
overall in terms of describing HSP has having potential to be lonely or
isolating, although isolation shows a stronger pattern.
Similarly
to loneliness, there is a significant difference in wellbeing between those who
are isolated and those who are not. The averages for each are more than 5
points from the average wellbeing suggesting a significant effect.
There
are many views and opinions around this topic. Some respondents come from a
more stable background with supportive family and friends, and getting out and
about socially. Others feel more lonely/isolated. These feelings can arise
because people are unable or do not want to explain their situation/problems to
their close friends/family, or because they don’t like the changes that HSP
puts on them, including both physical changes and employment changes. Some feel
invisible whereas others think they are very visible.
Do you Consider Yourself to be
Vulnerable?
This
question aimed to identify if people feel vulnerable with HSP or not. The
background to this question arose from discussions around safeguarding, where
the approach for safeguarding may need to be different for vulnerable people
and those who are not vulnerable. It was not known if people considered
themselves to be vulnerable or not. 361 respondents answered this question, as
shown in the following grid. Wellbeing scores are also calculated and shown in
brackets where there is a small sample size.
Table 34 – Identify as Vulnerable?
Consider
Self Vulnerable?
|
Yes
|
No
|
Wellbeing Yes
|
Wellbeing No
|
All
|
195 (54%)
|
166
|
44.5
|
50.6
|
Mobility 0-1
|
38 (54%)
|
33
|
44.5
|
51.8
|
Mobility 2-3
|
40 (48%)
|
44
|
43.5
|
49.4
|
Mobility 4-5
|
56 (55%)
|
45
|
47.4
|
51.1
|
Mobility 6-7
|
22 (56%)
|
17
|
41.6
|
(50.4)
|
Mobility 8-9
|
22 (69%)
|
10
|
42.6
|
(50.6)
|
British Isles
|
35 (46%)
|
41
|
42.1
|
48.8
|
North America
|
41 (51%)
|
39
|
45.1
|
50.9
|
South America
|
37 (59%)
|
26
|
44.5
|
53.7
|
France
|
22 (59%)
|
15
|
43.5
|
(51.5)
|
Europe
|
28 (58%)
|
20
|
47.7
|
50.2
|
Australia
|
12 (48%)
|
13
|
(41.1)
|
(49.2)
|
This
shows that around half of people with HSP consider themselves to be vulnerable.
Vulnerability tends to be similar across mobility bands and in different parts
of the world.
There
is a difference in wellbeing between those who are vulnerable and those who are
not. Some groups are more than 3 points from the average indicative of an
effect, but not necessarily significant.
People
identified that they feel vulnerable for two main groups of reasons, one group
is around the physical changes of HSP not allowing people to be able to defend
themselves or resist attack, the other group is around the consequences of HSP
symptoms, including balance problems, incontinence and speed/ease of movement
in crowded situations.
Have you suffered from abuse?
This
question aimed to identify if people with HSP have suffered from abuse. The
background to this question similarly arose from discussions around
safeguarding. It is important to note that the question is deliberately not
specific about types of abuse or timeframes when the abuse occurred. 359
respondents answered this question, as shown in the following grid. Wellbeing
scores are also calculated and shown in brackets where there is a small sample
size, and not shown for very small samples.
Table 35 – Suffered from abuse?
Suffered
from Abuse?
|
Yes
|
No
|
Wellbeing Yes
|
Wellbeing No
|
All
|
52 (14%)
|
307
|
43.0
|
48.2
|
Mobility 0-1
|
3 (4%)
|
66
|
-
|
48.0
|
Mobility 2-3
|
13 (15%)
|
72
|
(39.2)
|
48.6
|
Mobility 4-5
|
12 (12%)
|
88
|
(45.9)
|
49.4
|
Mobility 6-7
|
11 (28%)
|
28
|
(41.5)
|
47.0
|
Mobility 8-9
|
7 (23%)
|
24
|
-
|
46.6
|
British Isles
|
10 (13%)
|
66
|
(37.8)
|
46.8
|
North America
|
15 (19%)
|
65
|
(43.6)
|
49.0
|
South America
|
11 (18%)
|
51
|
(48.8)
|
48.6
|
France
|
2 (5%)
|
35
|
-
|
46.9
|
Europe
|
1 (2%)
|
46
|
-
|
49.1
|
Australia
|
7 (28%)
|
18
|
-
|
(48.3)
|
This
shows that around one in seven people with HSP have suffered from abuse. There
is a general trend which suggests that those with restricted mobility have
suffered abuse more than those who are more mobile. There appears to be a
higher proportion of people who have suffered from abuse in Australia, America
and the British Isles, and a lower proportion in mainland European countries.
Those
who have suffered abuse tend to have a lower wellbeing than those who have not.
It is interesting to note that this trend does not appear to hold in South America.
Approximately
three quarters of those who suffered from abuse indicated that this was as a
result of their HSP, and these come from across the range of mobility scores.
Wellbeing
Conclusions
Throughout this report
the different factors which have been shown to have the greatest link with
wellbeing have been identified. The tables below draw together the factors
which have the strongest link wellbeing, either positive or negative. The
number of respondents given is the total number which have or don’t have the
factor, irrespective of if they gave a wellbeing score.
Positive Effect
The factors below have
been identified as having a wellbeing which is better than average.
Table 36 – Positive Wellbeing Factors
Factor
|
Respondents
|
Wellbeing
|
Travel further than town daily (life-space)
|
35
|
51.7
|
Travel to town daily (life-space)
|
69
|
51.6
|
Not feeling lonely (life with HSP)
|
245
|
51.3
|
Daily use of cardiovascular gym
machines (activities)
|
21
|
51.0
|
Not feeling isolated (life with HSP)
|
255
|
50.9
|
Weekly music (activities)
|
28
|
50.8
|
Occasional music (activities)
|
34
|
50.7
|
Not feeling vulnerable (life with HSP)
|
166
|
50.6
|
No medication (medication)
|
46
|
50.6
|
Negative Effect
The factors below have
been identified as having a wellbeing which is lower than average. Results with
a small sample size (less than 20) have been put in brackets.
Table 37 – Negative Wellbeing Factors
Factor
|
Respondents
|
Wellbeing
|
Taking 6 medicines for HSP (medication)
|
5
|
(37.6)
|
Feeling isolated (life with HSP)
|
107
|
39.0
|
Feeling lonely (life with HSP)
|
116
|
39.5
|
Having SPG7 (diagnosis)
|
35
|
41.7
|
Diagnosis uncertain (diagnosis)
|
7
|
(42.1)
|
Suffered from abuse (life with HSP)
|
52
|
43.0
|
Taking 4 medicines for HSP (medication)
|
17
|
(44.2)
|
Several
of these symptoms are related to mood; feeling lonely, feeling isolated,
suffering from abuse and uncertainty of diagnosis. Those who do not feel lonely
or isolated overall have a significantly higher wellbeing than those who do.
Many of the factors in these tables are not connected with
mobility or other factors which are directly related to HSP. These factors may
not form part of routine discussions with medical professionals which frequently
focus on mobility, pain, continence and the other direct factors.
It is important to remember that it is possible to take
action to improve some of these other factors. It is not necessary to accept,
for example, that people are lonely or isolated. Help is available for some factors,
and getting such help may result in an improvement in wellbeing.
People should consult with a doctor or other professional to
advise on the best approach for any such change they wish to make. Potential
areas where changes could be made include:
- Decreasing: loneliness and/or isolation
- Taking part in activities which are enjoyable
- Being able to travel
- Getting help/support/counselling for any abuse
- Treatment/advice/exercises to slow the progression of HSP