Index

I thought this blog could do with an index to allow readers to find things more easily. I've grouped the various posts together by topic, with a content summary and a link to the post. Lists are sorted in reverse date order so most recent things are at the top. Last month included Dec-2016

The pages of this blog

Index Page
Blog Statistics Page
Symptoms timeline Page
My Research Compilation Page

Links to other pages/sites/places

Re(act) Community May-16
Rare disease day 2016 info Dec-15
My interactive SPATAX network researcher map Nov-15
Various maps showing HSP in the word Oct-15
UK rare disease survey Aug-15
UK 100000 genome project Jun-15
Request to write column for UK Newsletter Dec-13
Links to HSP groups around the world Oct-13
Disaster planning: Opportunity to influence Aug-13
Links to info pages and inheritance skipping Oct-12
Link to another hsp community page May-12
Links to info pages Feb-12
Links to other HSP bloggers Dec-11
Links to various hsp community pages Aug-11
Links to info pages Jun-11
Links to English HSP groups Nov-10

General information on the condition

Busy weekend. 3confs Jun-16
UK PIP Benefit Consultation Jan-16
ALS and the Ice Bucket: HSP, ALS and MND Differences Sep-14
Introduction to cell biology Mar-13
Another early practitioner: Jean martin charcot Mar-12
Partial translation between type name/number Feb-12
Differences in ~50 types of HSP May-11
Genetic test results interpretation Mar-11
Condition in types: Pure and complicated Feb-11
The original papers: Strumpell and Lorrain Jan-11
What the name means Jan-11


Specific information on the condition (alphabetical order)

Babinskis sign Apr-13
Depression:Many with HSP have mild depression Sep-11
Depression and Stress Screening tests  Mar-14
Depression, Stress, Mood Management class visit Apr-14
Depression - Assessing Yourself Jan-16
Jumping Feet/Clonus Jan-12
Leg muscles Mar-11
Life expectancy with HSP Jan-15
Nervous system Nov-11
Pes cavus, arched/high foot Jan-13
Pins and Needles Oct-11
Power plate circulation booster Dec-14
Spastic gait Apr-12
Toilet Finders Apps Mar-14
Urinary Issues Dec-12
More on urinating: compare HSP with Prostate problems Jan-13

Information about research

Research update Oct-16
Hidden cost of rare disease Oct-16
Rareomics Research Tool Mar-16
My Top 10 recent research papers May-15
New study dalfampridine ampyra for HSP Apr-15
Research papers update, processing results Nov-14
Spinal Column Repairs - TV programme Oct-14
Electrical stimulation to spine to treat paralysis Apr-14
New HSP Research Study Feb-14
Rare disease patient numbers outnumber cancer patients Jan-14
Research update, from Australia group Sep-13
Further reserach papers - Update on search results Apr-13
Research trawl update - 4 relevant papers Feb-13
Detailed Results Trawl - processing results Nov-12
Initial analysis of better search Aug-12
Better search, more papers Aug-12
Current research - from SP Foundation Jul-12
Most published researchers Jun-12
Initial stats on pubmed result Apr-12
FSP research, various current projects Oct-11
Studies reporting HSP Prevalance Aug-11
Trawl of variants - the 50 types of HSP Jul-11

My own symptoms

General symptoms update and clinic visit Nov-16
Gait Changes Sep-16
Ankle Foot Orthosis AFO May-16
Symptoms Timeline Post Apr-16
Legs getting heavier Mar-16
Stretches Update Feb-16
Update to walking and pilates Oct-15
Orthotics and new in-soles Sep-15
My exercise routine May-15
Another Physiotherapist visit Apr-15
A trip to physiotherapist Mar-15
Bladder medication update Feb-15
Trip to bowel specialist Nov-14
Bladder medication - start of Detrusitol, my 1st meds Oct-14
HSP Clinic Letter - thoughts following letter Jun-14
HSP Clinic Visit in London May-14
Visit to Depression, Stress, Mood Management class Apr-14
Trip to Doctor - to get referral Jan-14
Illness and Tiredness - fatigue when ill Nov-13
Tide turning? - beginning of significant change? Aug-13
Stress and tiredness - Stiffness when tired/stressed May-13
Stiffness - perhaps legs becomign stiffer Mar-13
Pilates - Movements I cannot make Nov-12
Use it or lose it - more tense after less exercise Sep-12
Shoe wear, Skid marks on car Jun-12
Beer - stumble more when drunk Mar-12
Emotional effects - tense muscles when emotional Nov-11
Riding my bike - feet slip off pedals Sep-11
Walking technique - heel first, filming project Jul-11
Walking technique - feet drag on floor Apr-11
Getting Pins and Needles Feb-11
Tense leg muscles after exercise Dec-10
My childhood/ young adulty symptoms Jun-10

Personal posts

Reach of Blog Dec-16
Signing up for mark-2-cure Nov-15
5 years of blogging Aug-15
Is HSP a disability Jan-15
Flu vaccination - info on the UK procedures Oct-13
Connecting with Facebook groups May-13
Rare disease day - becoming more proactive Feb-13
Thoughts at school - understanding inheritance Sep-12
Another arrival - more blood storage Jul-12
Joining HSP communities May-12
Two conditions: HSP, getting older Jan-12
I can still give blood May-11
Results interpretation - SPG4 Mar-11
The start of Pilates Oct-10
Neurologist advice - keep in shape Sep-10
Having the test - decision made Aug-10
Intron-12 - at risk of developing the condition Aug-10
Testing - should I get it? Jul-10
Blue sky thinking - stem cell solution Jul-10
Summary of my history Jun-10

Meetings and Presentations

UK HSP Support Group AGM 2016 Nov-16
Spatax meet 2016 - overview Jun-16
Spatax meet 2016- day1 Jul-16
Spatax meet 2016 - day2a Jul-16
Spatax meet 2016 - day2b Aug-16
Spatax meet 2016 - day3 Aug-16
Spatax meet 2016 - posters1 Aug-16
Spatax meet 2016 - posters2 Sep-16
Drug Repurposing meet 2016 - Pt1 Apr-16
Drug Repurposing meet 2016 - Pt3 Apr-16
Drug Repurposing meet 2016 - Pt2 Apr-16
Drug Repurposing meet 2016 Views Apr-16
UK support group 2015 AGM Jun-15
Differences between pure and complex - Prof Henry Houlden 2015 Jul-15
Insights into HSP - Dr Cahir O'Kane 2015 Jul-15
Potato Pants - Ian Bennett 2015 Aug-15
HSP Support Group 2014 AGM Jun-14
Plymouth Research - Prof Jon Marsden 2014 Jun-14
Physical Activity - Improve QOL? - Kate Winstone 2014 Jul-14
Warming and Cooling - Effect on HSP? - Amanda Denton 2014 Jul-14
HSP Historical Perspective - Dr Evan Reid 2014 Aug-14
Sportability - David Heard 2014 Aug-14
Hsp support group 2013 AGM Jun-13
Looking after yourself - Liz Redmond 2013 Jun-13
Promoting walking ability - Alison Clarke 2013 Jul-13
Research update - Dr Siva Nair 2013 Jul-13
Getting the correct diagnosis - Prof Henry Houlden 2013 Jul-13


My Annual Reviews



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