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 generally sorted in reverse date order so most recent things are at the top. Last month included Dec-2023

The pages of this blog

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

Links to other pages/sites/places

Stuff That Works	Apr-22
A quick and easy guide to sex and disability	Mar-22
Sticky McStickStick	Mar-22
ONS Outcomes for disabled people report	Feb-22
Useful web page - A to Z from an MS perspective	Sep-21
Rare Disease Videos on TED	Jan-21
Other HSP on YouTube	Nov-20
UK HSP Support Group on YouTube	Jul-20
Adaptive Games Controller	Feb-20
News: challenge needed, nerves, rehab, cholesterol link and more	Dec-19
News: Gigs, gene editing, exoskeleton	Oct-19
Various awareness days	Oct-18
NHS apps	May-18
Community Pages 2017	Mar-17
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

Driving and Mobility	Sep-23
Driving with HSP	Apr-23
Update on Patient Journey	Mar-23
HSP Patient Journey	Dec-22
Diagnostic Gap	May-20
Updated COVID-19 advice	Apr-20
Lockdown exercise advice from HSPRF	Apr-20
HSP and Coronavirus / COVID-19	Mar-20
Update to prevalence with HSP in UK	Jan-20
Review of treatment options	Mar-19
Which muscles for walking?	Feb-19
HSP historical timeline	Dec-17
International HSP names	Nov-17
Comparion of HSP and other condition symptoms	Apr-17
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)

An introduction to HSP	May-20
Babinskis sign	Apr-13
Coronavirus, Complex HSP and Learning Difficulties	Feb-21
Summary of depression posts	Oct-17
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
Living with the enemy	Mar-18
Fatigue	Oct-17
Hyperactive reflexes and Clonus	Nov-17
Jumping Feet/Clonus	Jan-12
Leg muscles	Mar-11
Life expectancy with HSP	Jan-15
Mental health awareness week	May-21
Nervous system	Nov-11
Pain with HSP	Jun-20
Pes cavus, arched/high foot	Jan-13
Pins and Needles	Oct-11
Power plate circulation booster	Dec-14
Physiotherapy for HSP	Jan-21
Stretches	Mar-21
Spastic gait	Apr-12
Toilet Finders Apps	Mar-14
Urinary Issues	Dec-12
More on urinating: compare HSP with Prostate problems	Jan-13
Intermittent Self-Catheterisation	Jan-17
Vibration sensitvity / numbness	Nov-18
Wellbeing Factor Overview	Apr-21

Information about research

Exoskeleton for HSP approved in Japan	Jan-23
Nerve stimulation research update	Nov-22
Potential Exoskeleton Walking Solution	Oct-22
Update from Australia	Oct-22
Stumbling, struggling, and shame due to spasticity	May-19
Diagnostic flowchart and nerve re-growth	Mar-19
2018 HSP Research Overview	Jan-19
HSP in the news	Nov-18
Various leg news and research	May-18
Pilates for Neurological Conditions	Feb-18
Study showing cooler temperatures affect walking	Jan-18
Report: Juggling care and daily life	Jun-17
HSP affecting Quality of Life	May-17
News and Research Stories (Mar 2017)	Mar-17
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

New Shoes	Dec-23
Clinic Visit (by telephone)	Oct-23
Symptoms update - Baclofen	Aug-23
Symptoms Update - Fatigue	May-23
Symptoms update - New Shoes!	Feb-23
2022 Blog Data and Health Review	Jan-23
Fatigue and walking speed	Nov-22
Antidepressants	Sep-22
Weight gain	Jun-22
Fatigue and Bladder	Apr-22
Muscle pain	Jan-22
New Shoes, Symptoms Update!	Nov-21
Symptoms update - my first fall!	Aug-21
Symptoms Update	Jun-21
Stretching Routine 2021	May-21
Clinic Visit, Baclofen and Symptoms Update	Sep-20
The bowel story	Jul-20
uneven legs, and feet	Jun-20
New shoes	May-20
Shadows and Hills	Mar-20
MRI scan result	Jan-20
Bladder, sleeping, stairs	May-19
Driving	Jan-19
More new shoes	Dec-18
Taking control of your healthcare system	Oct-18
Increasing fatigue (bike and walk)	Aug-18
Stretching Routine	Apr-18
fall, bike, bed, tired!	Apr-18
toe walking and the need to sit	Jan-18
Walking	Dec-17
New! Fitbit data (and some symptom updates)	Nov-17
Comments about my walking	Oct-17
Shoe wear update - data!	May-17
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

The burden of disability	Jun-23
Reflections on dating apps	Jun-23
The path to benefits	May-23
An excellent afternoon with students	Apr-23
Barriers to disclosure	Mar-23
Athletes with HSP in Commonwealth Games	Jun-22
Lily Rice - Commonwealth Games	May-22
Accepting the future	May-22
HSP Support Group Recruiting	Dec-21
Challenging Stereotypes Interview	Nov-21
Hereditary Spastic Paralympians!	Sep-21
ED&I Hats	Jun-21
The language of disability	Apr-21
Coronavirus Vaccine Time	Mar-21
Rare Showcase 2020 Lightning Talk	Nov-20
A week of publicity!	Nov-20
10 years of blogging!	Jun-20
A positive from coronavirus	Mar-20
Who am I?	Jul-19
Can you help the UK HSP Support Group?	Jun-19
Scafell Pike (highest land in England)	Apr-19
Diagnosis plus 10 years	Apr-19
3D printed walking stick holder	Aug-18
A little bit of family history	Mar-18
Alexa as a home help?	Sep-17
Chair of UK HSP Support Group	Jul-17
The 2017 Potato Pants Festival	Jun-17
HSP Falls Study Participation	Apr-17
Daily living scale study participation	Jan-17
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

Compassion Therapy - Hannah Gilbert 2023 AGM	Nov-23
Choosing Mobility Aids - Ian Bennett 2023 AGM	Nov-23
EuroHSP meeting in Innsbruck	Sep-23
Spastin recovery in HSP - Dr Cinzia Rinalso 2023 AGM	Aug-23
Diagnostic Odyssey - Ela Curic 2023 AGM	Jul-23
HSP Support Group 2023 AGM	Jul-23
Molecular Basis of HSP - Prof Crosby Dr Baple 2022 AGM	Aug-22
Overview of UK Benefits - Citizens Advice 2022 AGM	Aug-22
SP Foundation 2022 Conference	Jul-22
Successful 2022 UK support group AGM	Jul-22
Mindfulness, Acceptance and Values - Ray Owen 2021	Oct-21
Falling With HSP - Coralie Seary 2021	Aug-21
Spectrum of HSP genes in the UK, biobank/registry - Henry Houlden 2021	Jul-21
HSP Support Group 2021 AGM	Jul-21
Understanding Upper Motor Neuron Health - Dr Ozdinler 2020	Dec-20
Rehabilitation and Physical Activity - Dr Gita Ramdharry 2020	Sep-20
Insights from large cohort - Dr Channa Hewamadduma 2020	Aug-20
A Eureka Moment - Prof Andrew Crosby Dr Emma Baple 2020	Aug-20
UK HSP Support Group AGM 2020	Jul-20
Spatax Meeting 2019 - Posters	Nov-19
Spatax Meeting 2019 - papers	Nov-19
Spatax Meeting 2019 - my Poster	Nov-19
Bladder Management - Dr Mohammed Belal 2019	Sep-19
Carers Trust - Brandon Scott-Omenka 2019	Sep-19
HSP Cant Stop Me - Amber Meikle-Janney 2019	Aug-19
What is HSP? - Rebecca Schüle 2019	Aug-19
UK HSP Support Group AGM 2019	Jul-19
Euro HSP Meeting Vienna 2019	Jun-19
Functional Electrical Stimulation - Jon Graham 2018	Jul-18
Occupational Therapy - Fiona Shea 2018	Jul-18
A Carers Perspective of Living with HSP - Pat Reed 2018	Jun-18
UK HSP Group AGM	Jun-18
Current HSP Research - Prof Andrew Crosby 2017	Aug-17
Update to PARCC study - Prof Jon Marsden 2017	Aug-17
HSP Falls Study Results - Rebecca Chapman 2017	Aug-17
Living with the enemy - Robin Paijmans 2017	Aug-17
Overview of Genetics Service - Dr Nicola Cooper 2017	Jul-17
Physical Activity in Rare Conditions Collaboration	Feb-17
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
Pure and complex Differences - 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 Survey/Research

2023 - No survey questions this year	Oct-23
2022 Survey Results	Feb-23
2022 Survey Open	Sep-22
2021 Survey Results - relationships, acceptance, bladder	Feb-22
Topics covered by my surveys	Jan-22
2021 Survey Open	Oct-21
2020 Survey Results - Needs, Coronavirus, Life with HSP	Feb-21
2020 Survey Results - Country Specific Needs Analysis	Feb-21
2020 Survey launch	Oct-20
2019 Survey Results - medication, activities, travel	Feb-20
2019 Survey launch	Oct-19
2018 Survey Results - Symptoms, sleep, wellbeing	Feb-19
2018 Survey Questions (for translation)	Sep-18
Annual survey - The background, the reasons and the limits!	Sep-18
2018 Survey Open	Sep-18
2017 Survey Results - pain, walking, work, wellbeing	Feb-18
2017 Survey launch	Sep-17
2016 Survey Results - fatigue, bladder bowel	Feb-17
2016 Survey launch	Sep-16
Collecting 2016 Survey Ideas	May-16
2015 Survey Results - home alterations, depression	Feb-16
2015 survey launch	Sep-15
Reflections on 2014 survey results	Mar-15
2014 Survey Results - medication	Feb-15
2014 Survey launch	Sep-14
2013 Survey Results - symptoms & misdiagnosis	Feb-14
2013 Survey launch	Sep-13

My Annual Reviews

Review of 2023	Dec-23
Review of 2022	Dec-22
Review of 2021	Dec-21
Review of 2020	Dec-20
Review of 2019	Dec-19
Review of 2018	Dec-18
Review of 2017	Dec-17
Review of 2016	Dec-16
Review of 2015	Dec-15
Review of 2014	Dec-14
Review of 2013	Dec-13
Review of 2012	Dec-12