In the last year or so i've started to get the occasional comment about my walking.
Some of these are from colleagues at work who I don't see very often. They all know about my HSP, but I have also had some comments from strangers. I wasn't expecting this to happen! It is a bit unsettling, and i've not yet worked out how I should react.
I realise that this must mean that my spasticity is beginning to be more visible, and I'll probably have a few answers lined up which I can just give. Reciting my story to strangers is not really my style, so initially I'll probably go for something like "my legs are just a bit stiff". (I realise that comment about not reciting my life story is a bit contrary to you reading my life story here!)
One person made a comment once that I should use the lift, when my foot scuffed on the way up some stairs. I automatically thought "no! I need to use the stairs to keep my muscles working, you don't understand" - but of course I didn't say this. It was just a quick comment with no context, and my mental reaction was a bit strong and I need to watch that - part of the stress management toolkit.
Saturday, 21 October 2017
Saturday, 14 October 2017
Fatigue
Fatigue seems to be a reasonably common symptom with HSP - my 2013 survey identified that fatigue was the third most commonly occurring symptom (after loss of balance and getting more stiff in the cold). 62% of respondents reported that fatigue was significant (occuring frequently, regularly, most of the time or all of the time), 20% of respondents indicated that fatigue was minor or affected them occasionally, with 8% of respondents not being affected. Full report here: http://hspjourney.blogspot.co.uk/2014/02/hsp-survey-results.html
So, what information can I found out about fatigue in HSP? - Not much.
People with HSP on patients like me also report fatigue, with 20% reporting severe, 40% moderate, 33% mild and 7% without fatigue. Grouping severe and moderate together (60%) this is the same result I showed in 2013. Data here https://www.patientslikeme.com/symptoms/show/7-fatigue?condition_id=493 (although you have to be signed in to see this).
There are two papers:
One from 1999: https://www.ncbi.nlm.nih.gov/pubmed/10368840 - with no abtract here. Some hunting shows the start of the article here: http://onlinelibrary.wiley.com/doi/10.1002/pri.1999.4.1.68/pdf This paper appears to cover the aspects of HSP as they were at the time. There is no mention of fatigue on the first page.
The other paper is from 2016: https://www.ncbi.nlm.nih.gov/pubmed/26806216 This paper compared 30 people with SPG4 HSP with 30 controls in Brazil. This paper reports that patients with HSP had higher levels of fatigue than controls (as well as more pain and more depression).
The lack of published information, and comments about fatigue from others led me to include this in my 2016 survey, http://hspjourney.blogspot.co.uk/2017/02/2016-survey-results.html I asked people to complete 3 different fatigue surveys and these results showed;
I compared my results with the Brazil results and found they were comparable.
If you have a low mood/depression and wish to do something about it, you could look here: https://moodgym.com.au/ - I found this on this podcast http://www.bbc.co.uk/programmes/b082hg9v - plenty of other interesting similar podcasts here!
So, what information can I found out about fatigue in HSP? - Not much.
People with HSP on patients like me also report fatigue, with 20% reporting severe, 40% moderate, 33% mild and 7% without fatigue. Grouping severe and moderate together (60%) this is the same result I showed in 2013. Data here https://www.patientslikeme.com/symptoms/show/7-fatigue?condition_id=493 (although you have to be signed in to see this).
There are two papers:
One from 1999: https://www.ncbi.nlm.nih.gov/pubmed/10368840 - with no abtract here. Some hunting shows the start of the article here: http://onlinelibrary.wiley.com/doi/10.1002/pri.1999.4.1.68/pdf This paper appears to cover the aspects of HSP as they were at the time. There is no mention of fatigue on the first page.
The other paper is from 2016: https://www.ncbi.nlm.nih.gov/pubmed/26806216 This paper compared 30 people with SPG4 HSP with 30 controls in Brazil. This paper reports that patients with HSP had higher levels of fatigue than controls (as well as more pain and more depression).
The lack of published information, and comments about fatigue from others led me to include this in my 2016 survey, http://hspjourney.blogspot.co.uk/2017/02/2016-survey-results.html I asked people to complete 3 different fatigue surveys and these results showed;
- 11% of people had mild fatigue, 62% had moderate fatigue and 27% had severe fatigue.
- Fatigue is generally independent of mobility.
- Whilst the physical factors of HSP contribute the most to fatigue there is also an important cognitive aspect.
- Those with SPG7 tend to have a higher level of fatigue than those with SPG4.
I compared my results with the Brazil results and found they were comparable.
If you have a low mood/depression and wish to do something about it, you could look here: https://moodgym.com.au/ - I found this on this podcast http://www.bbc.co.uk/programmes/b082hg9v - plenty of other interesting similar podcasts here!
Friday, 6 October 2017
Summary of depression posts
I've been keeping an eye out on my blog statistics, and one of my posts on depression is getting quite a bit of interest in the last few weeks.
This post simply summarises the main depression posts I've put up, here together for handy reference.
In this post I report the Generalised Anxiety Disorder Questionnaire (GAD-7) questionnaire and the Patient Health Questionnaire (PHQ-9) tests after encountering them at my referral to the local psychology unit. The post includes links to both and a summary of how scores are interpreted.
This post is where I first found the paper describing the prevalence of depression in people with HSP from Estonia. I then use this paper in 2015 as a comparison with my own results.
This post is a precis of my notes from the stress and mood management course I went on. The course introduced cognitive behavioural therapy, descriptions of the normal cycles of stress/anxiety and low mood/depression, and various tricks to help break out of those cycles, rules for living, communication, and problem solving.
This post was written after a conversation with a friend who had been suffering from depression and described an alternative approach to assessing yourself than the two questionnaires from the 2014 post. This self assessment considers well-being and aligns it with depression. You score yourself on how well you are living within your own values.
At the 2013 UK AGM Liz Redmond gave a talk called "Looking After Yourself" which covered low mood, another term for depression. The talk gave various techniques to help look after your mental health. (On a similar theme, see also;
In my 2015 survey I asked respondents to complete the PHQ-2 questionaire which can be used as a screening tool for depression. Overall 63% of respondents had some symptoms of depression and 37% were without those symptoms. Additionally, the results suggest that around one quarter of people with HSP may require further assessment for depression, particularly for those who are using walking frames all or most of the time to get around. There are further details in the link on my analysis of these results.
Depression was one of the symptoms mentioned in my 2013 survey, which showed roughly 1/3 with no depression, 1/3 with mild depression and 1/3 with significant depression.
This post simply summarises the main depression posts I've put up, here together for handy reference.
Stress and depression tests (March 14)
http://hspjourney.blogspot.co.uk/2014/03/stress-and-depression-tests.htmlIn this post I report the Generalised Anxiety Disorder Questionnaire (GAD-7) questionnaire and the Patient Health Questionnaire (PHQ-9) tests after encountering them at my referral to the local psychology unit. The post includes links to both and a summary of how scores are interpreted.
The depression paper! (September 11)
http://hspjourney.blogspot.co.uk/2011/09/depression.htmlThis post is where I first found the paper describing the prevalence of depression in people with HSP from Estonia. I then use this paper in 2015 as a comparison with my own results.
Stress and mood management course notes (April 2014)
http://hspjourney.blogspot.co.uk/2014/04/stress-and-mood-management.htmlThis post is a precis of my notes from the stress and mood management course I went on. The course introduced cognitive behavioural therapy, descriptions of the normal cycles of stress/anxiety and low mood/depression, and various tricks to help break out of those cycles, rules for living, communication, and problem solving.
Assessing your own depression (January 16)
http://hspjourney.blogspot.co.uk/2016/01/depression-and-assessing-yourself.htmlThis post was written after a conversation with a friend who had been suffering from depression and described an alternative approach to assessing yourself than the two questionnaires from the 2014 post. This self assessment considers well-being and aligns it with depression. You score yourself on how well you are living within your own values.
Presentation at the 2013 AGM
http://hspjourney.blogspot.co.uk/2013/06/agm-looking-after-yourself-liz-redmond.htmlAt the 2013 UK AGM Liz Redmond gave a talk called "Looking After Yourself" which covered low mood, another term for depression. The talk gave various techniques to help look after your mental health. (On a similar theme, see also;
- the Sportability talk by David Heard from the 2014 AGM http://hspjourney.blogspot.co.uk/2014/08/agm-sportability-david-heard.html, and
- the "living with the enemy" talk by Robin Pajmans at the 2017 AGM http://hspjourney.blogspot.co.uk/2017/08/agm2017-living-with-enemy-robin-paijmans.html)
Part of my 2015 survey:
http://hspjourney.blogspot.co.uk/2016/02/2015-survey-results.htmlIn my 2015 survey I asked respondents to complete the PHQ-2 questionaire which can be used as a screening tool for depression. Overall 63% of respondents had some symptoms of depression and 37% were without those symptoms. Additionally, the results suggest that around one quarter of people with HSP may require further assessment for depression, particularly for those who are using walking frames all or most of the time to get around. There are further details in the link on my analysis of these results.
A symptom included in my 2013 survey
http://hspjourney.blogspot.co.uk/2014/02/hsp-survey-results.htmlDepression was one of the symptoms mentioned in my 2013 survey, which showed roughly 1/3 with no depression, 1/3 with mild depression and 1/3 with significant depression.
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