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



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