I've just, in the last month or so got both new trainers and new shoes, which means that I now have my first set of shoe wear data, co-incidentally two pairs at the same time.
My shoes lasted 2 years 2 months From Oct-2014 through to Dec-2016 (they were basically worn out by Christmas 2016, but I dragged another couple of months use out of them, getting the new pair in April 2017).
My trainers lasted about a year less, one year and three months from Jan 2016 through to April 2017 (with the new pair in May 2017).
In both cases, you can see that my left shoe is substantially more worn than my right shoe. (of course, we're looking at them from your perspective, so my left shoe appears on the right of the photo!)
Shoes:
The main problem for my shoes (which is not too surprising) is that they let water in when the ground was wet.
Trainers
The main problem for my trainers is that the sole on the left shoe was becoming unstuck, and would occasionally fold back under the shoe if my foot passed close to the ground. You can see that the soles of my trainers are considerably more worn that the soles of my shoes, and this is because I wear my trainers whilst riding my bike.
I was more dissappointed with the rate of wear on my Diadora trainers than with the wear on my shoes. Clearly the bike wears them out quite quickly, and whilst I didnt perceive wearing the trainers much other than for cycling, the wear on the tips suggests that this is not the case! I've gone cheap for my next pair, with Boston Athletics.
I think that my shoes (which were Sketchers) fared much better - these are the shoes that get most of the wear and tear, and I've worn out and about in most environments (woods, trees, rocks, beaches, . My replacement shoes are also Sketchers.
The only shoes that have not yet entered the logging system are the shoes that I wear at work - I have two pairs of those and they aren't going anywhere soon. I also have two pairs of boots for walking, but they get used once in a blue moon and would feature here way after my work shoes.
This blog records my journey to Hereditary Spastic Paraplegia (HSP, also known as Familial Spastic Paraparesis or FSP). I was diagnosed with SPG4 in 2009 when my wife became pregnant with our first child. I currently wear insoles, do daily stretches and weekly Pilates. I take medication for my bladder. I tweet about HSP, RareDisease and other things @munkee74.
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Friday, 12 May 2017
Sunday, 7 May 2017
HSP affecting Quality of Life
Study of HSP
I found a research paper from 2016 which looks at the
differences between people with HSP and a control population to evaluate the
burden of HSP. The study was undertaken in Norway , comparing 108 people over 30 yrs old with
HSP against an age and gender matched sample from a study of 46 thousand people.
The paper is called “Health survey of adults
with hereditary spastic paraparesis compared to population study controls”, by Krister
W. Fjermestad, Øivind J. Kanavin, Eva E. Næss, Lise B. Hoxmark and Grete
Hummelvoll. You can read the full paper here: https://ojrd.biomedcentral.com/articles/10.1186/s13023-016-0469-0. I've taken my highlights from the paper and repeated below.
The study is a broad survey of health and everyday life domains among persons with HSP, including life satisfaction, mental wellbeing, social support, problems with sleep, memory, pain, gastrointestinal/urinary functioning, and ability to perform activities of daily living (ADL).
The HSP
sample more frequently lived alone. Overall, the HSP sample reported lower life
satisfaction, lower mental wellbeing and lower social support, as well as
poorer memory and sleep, compared to controls. Furthermore, the HSP sample more
frequently reported musculoskeletal pain, constipation, and urinary
incontinence compared to controls. There was no difference between samples in
frequency of physical activity and alcohol and tobacco use. Men with HSP
reported higher impact of HSP, lower life satisfaction, and less ability to
perform activities of daily living compared to women with HSP.
Adults with HSP experience disease burden on a larger number of areas than previously documented, and men with HSP may represent a particularly vulnerable group.
Results
All of the comparisons in this section are with the control sample.
Participants
in the HSP sample less frequently lived with a partner/spouse and more
frequently lived alone. There was no difference between the samples in
frequency of living with parents or children.
Sleep
Study considers daytime drowsiness, frequent night awakenings, trouble falling asleep and waking up early. People with HSP
reported more sleep problems on all items
Pain
Study considers chronic pain of >3 months duration in the
past year. The most frequent pain sites are: feet, knees, lower back, and hips. People with HSP
confirmed more frequent musculoskeletal pain, more frequent pain in the lower body pain sites and less frequent pain in the upper body pain
sites.
Comorbid
disease prevalence
The most
frequently reported diseases were mental health problems, osteoarthritis, hand eczema, psoriasis, asthma and brain hemorrhage. People with HSP more
frequently reported brain hemorrhage and
psoriasis.
Gastrointestinal
problems
The study considered constipation, alternating
constipation and diarrhea, bloating, heartburn, diarrhea, nausea and fecal incontinence. People with HSP more
frequently reported much problems on alternating constipation and diarrhea, constipation and fecal incontinence.
Urinary
problems
The study considered urinary incontinence. People with HSP more
frequently reported urinary incontinence
Oral health
There was no difference in oral health but people with HSP reported more frequent dental visits during the last year
compared to controls.
Physical
activity
Study considered the frequency of physical activity (daily, 2–3 times pr. week, once a
week, less than once a week and never). There is no
difference in frequency. Those with HSP spent more hours sitting daily compared to
controls.
Medication
use
The study considers the percentage
of participants taking nonprescription medicines 1–3 times weekly:
for general pain, constipation, headache and heartburn. People with HSP more
frequently reported taking medication for constipation and general pain. Otherwise no
difference.
Alcohol and
tobacco use
There was no difference for participants drinking alcohol at least 2–3 times pr. week, never drinking alcohol and smoking daily.
Social
support
The study looked at the percentage
of participants who confirmed practical support and emotional support. those with HSP
reported lower practical support and emotional support.
Mobility
and activities of daily living
In terms of
mobility, 35 % reported to walk without aids outdoors, while 56 % reported to
walk without aids indoors. Around a third (31 %) reported to use a wheelchair
indoors, while 45 % reported to use a wheelchair outdoors. The majority (80 %)
confirmed having a driver’s license.
Men
reported more activities they could not perform without assistance compared to
women. Fisher’s exact tests showed that the two activities men reported to be
able to perform less frequently compared to women were simple household chores and
laundry.
Frequency
of falling
In the HSP
sample, 47 % reported to have fallen in the last 3 months. There was no gender
difference in frequency of falling and no
significant age difference between those who confirmed having fallen and those
who did not.
HSP sample
medication use
In the HSP
sample, 15 % reported using Botox injections, 10 % reported using a baclofen
pump, and 33 % reported taking oral spasmolytics. Of these, the percentages of
participants reporting having some or large effect of the medication were 83 %
for Botox, 86 % for baclofen pump, and 82 % for oral spasmolytics.
Gender
differences within the HSP sample
There were
no significant gender differences on any of the variables shown in Table 2,
except overall life satisfaction. Males rated significantly lower life
satisfaction compared to females
Pure versus
complex HSP
There was
no difference between the proxy pure/complex types in terms of age, total body
impact, pain, mental well-being, memory, gastrointestinal/urinary problems,
number of additional diseases, BMI, or physical activity.
Discussion
Compared to controls, persons with HSP reported
lower scores on life satisfaction, mental wellbeing, as well as perceived
practical and emotional support. Furthermore, compared to controls, persons
with HSP reported more problems with memory, sleep, gastrointestinal and
urinary function, and pain in the lower body. The results showed persons with
HSP experience large total physical impact of their disorder. This total impact
was significantly correlated with age, mental wellbeing, memory problems,
gastrointestinal problems, extent of pain, number of co-morbid diseases, and
life satisfaction. Thus, the disease burden for adults with HSP is multifaceted,
and involves problem areas not previously documented.
Our results
also showed considerable impact on activities of daily living for persons with
HSP. Over half the sample reported not being able to take the bus, and nearly
half the sample reported not being able to do more than basic house chores. They were surprised to find that age was only correlated with total physical impact
and ability to perform ADL, and not with any other health-related variable.
This implies that the burden of disease experienced by adults with HSP is
considerable across the lifespan. Importantly, older participants reported less
practical support compared to younger participants, possibly indicating a
particular need for the older HSP group.
There are some important gender differences within the HSP sample.
Specifically, men reported significantly higher overall impact of HSP, higher
impact on sexual function, more ADL they could not perform without assistance,
and lower overall life satisfaction compared to women with HSP. In summary, the results
indicate that men with HSP represent a particularly vulnerable group in terms
of overall HSP impact and quality of life.